Updates

05/19/09

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2004 Updates

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Jan 2005
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Update on Mel 1/01

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Update on Mel 1/02

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Update on Mel 1/03

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Update on Mel 1/04

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Update on Mel 1/05

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Update on Mel 1/06

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Update on Mel 1/07

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Update on Mel 1/08

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Update on Mel 1/09

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Update on Mel 1/10

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Update on Mel 1/11

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Update on Mel 1/30

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Update on Mel 1/31

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Feb 2005
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Update on Mel 2/01

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Update on Mel 2/03

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Update on Mel 2/04

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Update on Mel 2/05

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Update on Mel 2/06 12:30pm

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Update on Mel 2/06   7:30pm

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Update on Mel 2/07 11:40am

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Update on Mel 2/07   8:30pm

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Update on Mel 2/08 12:30pm

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Update on Mel 2/08   8:40pm

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Update on Mel 2/09 11:00am

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Update on Mel 2/09   9:30pm

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Update on Mel 2/10   9:30am

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Update on Mel 2/10   9:30pm

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Update on Mel 2/11

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Update on Mel 2/13

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Update on Mel 2/14

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March 2005
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Update on Mel 3/01

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Update on Mel 3/02

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Update on Mel 3/03

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Update on Mel 3/08

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Update on Mel 3/17

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Update on Mel 3/20

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Update on Mel 3/31

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April 2005
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Update on Mel 4/4

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Update on Mel 4/5

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Update on Mel 4/6

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Update on Mel 4/7

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Update on Mel 4/10

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Update on Mel 4/11

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May 2005
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Update on Mel 5/03

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Update on Mel 5/10

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June 2005
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Update on Mel 6/07

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July

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August 2005
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Update 8/20

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September 2005
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Update 9/28

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October
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Update 10/15

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March 2006
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Update 3/3/06

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April 2006
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Update 4/20/06

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August 2006
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Update 8/16/06

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October 2006
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Update 10/02/06

 

 

Update on Mel 1/02

Mel was pretty giggly for most of the day today. She did get a little upset tonight worrying about tomorrows MRI. And she did get upset when she couldnít go to SUPER WAL-MART with Mom today. It was cold and starting to rain, AGAIN. It was for the best though Deb needs some time away from the house.

Mel did a lot of work book stuff today, and watched a movie. Allison and Skye came over this evening but it seemed like Mel watched them more than anything else.

Aunt Sissy made dinner tonight and brought it over to the house. Thanks Sis! Mel pretty much ate most of the night getting prepared for tomorrows NO eating and only clear fluids until knockout time. OH boy is she going to be hungry when she wakes up.

Melís right hand is still not working the way it should and, the right foot is still dragging a bit. The MRI is good timing. I am praying it is just swelling around the tumor and not the tumor itís self. We will find out soon enough I guess.

Deb seems to be getting worse. I hope it is just anxiety before the MRI. But I am afraid it is more then that.

Please remember Mel, Deb, Devin, and all our little friends and there families in your prayers tonight. I am not sure how much longer I can hold it all together. But I know with many, many prayers from you and myself, I will make it. Please pray for a good reading of the MRI tomorrow and PRAY FOR A MIRACLE!

Good Night and God Bless         

Melodyís Daddy

Rob

 

Update on Mel 1/03

It was a long and rainy day for us. Our day started early 4am early. Mine started a little earlier 3am.

Melody, Mommy, and Bammom started out at 5am for San Diego and what wound up being a 2 + hour trip down in the rain. I meet the ladies at Childrenís Hospital at 7am to check in and get Melís paper work all done and then we waited about Ĺ hr. for someone to come and get us to do the MRI.

The MRI for the most part was uneventful. The put Mel to sleep in her chair and then we lifted her up onto the bed and in She went. Deb got a little upset when Melís breathing sounded different kind of shallow but the doctor assured her it was normal. After the MRI she went to recovery and woke up pretty fast and, wanted right away to get back in her chair because her sides were hurting form lying flat. She had a rough time with waking up and it took us about an hour to get out of there for a sandwich. But we made it out and made it homeÖ.. Wait a second let me back up a bit. On the way home we had to stop by Toy-R-Us, it on the way. Mel had a couple of gift cards burning a hole on her pocket. Letís see she got a few karaoke CDís, a Hello Kitty work center, and are you ready for this a Hello Kitty refrigerator. What a stinker!

We havenít done much since getting home Mel isnít right today I hope itís because of the anesthetic. Her hand and foot still arenít right and she complained of a headache this evening. We are hoping the headache was because she was hungry she hasnít eaten much today. As a matter of fact Deb is out at Mac Donaldís right now getting a happy meal for the little stinker.

I must say Mel has been pretty giggly today and fro the most part Deb is hanging in there pretty well. If she is as antsy as I am waiting for the results then she is handling it pretty well or hide it pretty well.

We are just going to hang out tonight watching a little TV and go to bed really early tonight.

Thank you for all the prayers and guest book entries. Please keep them both coming. They are priceless, and nothing compares to either of them. Please remember all the other kids and there families in your prayers tonight.

As soon as we hear about the results of the MRI, I will post them so keep checking back. Good night and God Bless you all.

Melodyís Daddy

Rob

 

Update on Mel 1/4

Not much to write about today.  Today was a boring, lazy day for the most part.  Melody woke up with a bellyache that lasted until she really ate well.  From not eating much yesterday I think she was over hungry to the point she was nauseous and nothing sounded good.  She mostly watched TV and worked in workbooks today.  Also, I went and checked her PO Box and she had a ton of mail and packages.  That was fun for a little while.  Tonight the cousins are over visiting.

No news yet on yesterdays MRI.  We are anxiously awaiting a call from Childrenís.  Praying for a call with good news; afraid to get a call with bad news.

Please continue to pray for Melodyís earthly healing.  I canít bear the thought of not having her.  Thank you.

Goodnight and God bless each and every one of you

Melodyís Mommy

Debbie

 

Update on Mel 1/5

Our hearts are breaking tonight. The news is not what we were hoping for. However we have not given up hope! There is no change in the tumor however there are new tumor like things happen in the ventricles and in the gray madder of the brain. There are no other avenues that are going to make this go away. There are other chemo options that may or may not slow the progress.

Debbie and I have decided to continue with the Temador and the Protocel. The Temador has been known to stop or slow things down some. But there really is not much chance of stopping it completely or at all for the matter. We said from day one that we would not let her suffer or be in pain if we had a choice. The other chemoís will likely make her sick and loose her hair. There is little or no chance that it will even help matters. What kind of life is that for anyone let alone our only daughter who is one of the most important things in our lives along with Devin.

I donít know if this will make any sense but it wasnít that hard to make that decision but at the same time it is the most difficult choice we have ever had to make in our lives. If I knew there were any chance that something else would make this all go away I would give it to her. But in my heart I know that this is the best thing we can do for her.

We will make every minute count, every day something special just as we always have tried. We will have our up days and our down days just like we always have. There must be something really special that God has planned for Melody and our family.      

I donít really know what else to say at best we have 3 to 6 months with our precious princess. There are so many things I want to say and so many things I want to do but my brain isn't working very well right now. I canít seem to get things out and on to this update.

Deb is doing surprisingly well. In our hearts I guess we knew this was inevitable. Our hearts ache like nothing I have ever felt before. But I know it will all be for the best for Melody.

Although someday in the near future Melody will be dancing on the clouds and celebrating Jesusí next birthday with him jumping up and down asking over and over and over if she can help blow out the candles with him. I not sure what I was going to say next see itís that brain thing not working again. But I will leave that thought here.

I am sorry that this is the news I have to share with you all. It has been the hardest things I have ever had to write in my life. Please do not stop praying for a miracle. God has done crazier things. (the platypus) ;-)

Melody has been in a great mood all day long. Giggling and laughing except when Bammom made her cryÖ.twice. She still loves you mom she told me so.

God bless us all and may he give us the strength to get us through this.

Melodyís Daddy FOREVER!

Rob

 

Update on Mel 1/6

Itís been kind of a somber day here. Not a whole lot to say. I stayed home from work today and Devin home from school. We just wanted to be together as a family. We even all went to the small together today.

I want to tell you all what Melody and Devin know. Melody doesnít know what the final out come will be yet. We will tell her when the time is right and that is not now. So please remember that in your visits. Devin does know. We thought it only fair to tell him so he would know why we are as upset as we are. He does really understand I donít think. He is angry, he thinks with God. After we told him he went into the living room and lit some candles and prayed. We all three cried together while Mrs. Friend did school work with Melody. Her timing was impeccable.

Mel did a lot of work book stuff today and watched some TV. Allison and Skye came over for a visit this evening. Mel is doing her homework right now. Mel wasn't as happy today as yesterday but we did have some great giggly moments.

Deb has her first appointment tomorrow with her physiatrists. I am so glad it finally worked out and she can go. They were playing phone tag for about a week.

I am simply amazed at the amount of visits to Melís web page and all the guest book entries as well. Although in contrast to the visits the guest book entries are small over 800 visits today. I understand though that the words are hard to find sometimes. Just a simple hello and we are thinking about you can go a long, long way. So please leave us a message if you have a minute or two. Also please, please keep coming back and visiting us. Just seeing how many people are watching our little princessís journey touches our hearts so very, very much.

We are not angry. We are not mad. We are just heartbroken. I do not blame God or anyone or anything. This is the life we have been given and we will live it to the best of our abilities. What ever God has planned for us we will take it and do with it the best we know how. He must have something big for us to do with horrid disease.   

Thank you so much for all the prayers for Melody, Devin, Deb and I. They are much needed. Thank you for understanding and respecting the decision we have made. I hope you never have to make it. Please remember in your prayers all our caringbridge kids and there families that we have come to know and love so much, and all the parents tonight who are with out there little ones whom they love so much. Live each day as it is the last. Give your kids your family and your friends hug everyday and tell them how much they mean to you, tell them how much you love them. And have no regrets!

Please pray for Melís miracle! 

Melodyís Daddy

Rob

 

Update on Mel 1/7

Itís been a pretty good day. Mel wasnít necessarily in a good mood today but not necessarily in a bad mood either. Just kind of quite toady. She didnít do much either some work book stuff, some TV, and her cousins came over to play this evening. Curt and Megan came over for a visit as well bringing dinner along with them. Panda Express. Mmmmmm (think of Homer Simpson) Chinese food, well sort of anyway. We have had any in a while so it was really good. Thanks Curt for the good food and great conversations even if I did most of the talking.

Mel did get her giggles going a few times today and some tonight. Allison and Skye can really make her laugh. They are cleaning up to go home for the night. Iím sure they will be over tomorrow at some point.

It has been ANOTHER rainy day here in So. Cal. It is supposed to rain through Monday and into Tuesday. Mel and I were supposed to go out and play in it today but it was a little colder than expected. Maybe tomorrow, itís supposed to be a little warmer storm. Donít let my ďANOTHERĒ fool you we donít get weather like this very often so we get excited when we do get it.

Deb and I are emotionally exhausted but, some how the tears keep coming. Nothing special needs to be said or thought of sometimes they just start. Even at work today on my break in the morning there they were. I think the wind blew in the wrong direction or something. Who knows!

I did check on all our caringbridge friends today but I with being awake since 3 Oíclock this morning my brain isnít working really good right now. I want to ask you for some special prayers for a few of the kids put the only one that is popping into my head right now is Emerald. She had surgery today and they were able to remove 90% of her tumor. Thanks be to God! She is in PICU tonight and her mom Kimberly is unable to sleep there with her (what a stupid rule). She is having some expected problems. Please say a special prayer for her and her family tonight. As well as all the other kids and there families.

Thank you for all the prayers for Melody and our Family. Thank you so much for all the guest book entries. Just a few words from a stranger or a friend can carry us trough the day. They mean so much to us you have no idea. Thank you for all the emails I will make my best attempt to get back to you. We are so far behind on our thank you cards I donít think we will ever catch up. Iím talking thousands behind you all amaze me. Please continue to keep the prayers for Melís miracle, strength for our family and guest book entries coming.

Good night and God bless you all

Melodyís Daddy

Rob

 

P.S. - Go Chargers!!!! Good luck in the playoffs.

 

Update on Mel 1/8

Well another day without a lot to talk about. Mel did watched Shrek 2 again, did a lot of cross word puzzles, and did some math in one of her work books. The cousins came over for in the evening while Devin and I joined friends and family watched the Chargers loose to the jets in OT. Its 10 min. to 10:00 and the girls just left.

Deb is kind of quite today. I think it is the medication. Grammy and I talked this morning and watched the rain together. Mostly about Deb and what she is feeling.

Thank you for all the prayers for Melody and our family. Thank you again for all the prayers for all our caringbridge friends and there families. I am sorry itís a short update tonight. MAYBE Iíll get in to things more tomorrow.

God bless you all and thank you for everything.

Melodyís Daddy

Rob

 

Update on Mel 1/9

Itís been a wet and uneventful day here. Not much to say about it except we got a butt load of rain toady and the three days prior. Mel never did make it out to play in it but, Devin and I had a snow ball fight with the snow that Mike and Cindy brought down from the local mountains. (Devin lost ;-) )

Letís see what my little stinker did today. Lots of cross word puzzles, lots of word jumbles, and lots of these, see how many words you can make out of these words puzzles. Now let me tell you! If it werenít for the spell check on this word processor you wouldnít understand a dam thing that I write. Mel also watched a couple of movies and some cartoons today, played with her cousins, and made a gift for someone very special to her. I am not going to say because I do not want to give away the surprise.

At 3:30 I had to finally tell Deb to get off her feeling sorry but, take a shower and go pick up her prescriptions. Now I am not saying she doesnít do anything she does a lot a round her mostly with Mel. She made a huge breakfast this morning and she absolutely everything for Mel. I just had a talk with Mel and asked her to let Bammom do more for her this week and to try and give Mommy a break. She did let me take her potty a few times while Mommy was out and about and even while she (Mommy) is sleeping in the recliner.

Well thatís about it for tonight. I really canít think of anything else to say. I am feeling guilty about telling Deb what I told her to do today. I did apologize to her but I am afraid it was too much to even say to her. I just do not want her to waste any days moping around. Debís mood sets the tone in the house and lately the tone has not been good. It rubs off on everyone especially Mel. When Debs not happy Melís not happy, and when Melís not happy Debs not happy. I have been trying really hard to keep things upbeat around but it seems impossible with Deb since Wednesday. I am going to take her away from the house one day this week. Not sure what we are going to do though. Any ideas?

I was wondering if anyone has a wireless network card for a laptop and a wireless router that I could borrow or purchase for a minimal cost. If you have one please email me. Just click on my name on the home page.

Thank you for all the prayers or Melody and the rest of our family. Please pray extra hard for Deb tonight. I feel like I am loosing her. Please remember all our caringbridge and other friends tonight. Pray for all the parents that with out there little ones. Pray for all the parents that are facing a newly diagnosed child tonight.

God bless you all and thank for all that you have done for us.

Melodyís Daddy

Rob

 

Update on Mel 1/10

First of all Happy Anniversary Aunt Sissy and Uncle Browne. Thank you for being there for us! We would be lost with out you.

Melís day has started out slowly as have the past few days. And it was another day of not a lot of things done for her but she managed to keep busy for most of the day. Lets see she did a lot more word search puzzles (thank god for the internet), watched a little TV, and played with her cousins. Speaking of her cousins, I started a sweet silly string fight tonight. Mel didnít really want to have anything to do it but we made the best of it anyway. Devin, Allison, Skye and I went at it. Ok well I went at it. I had a can in each hand and was letting loose. There was such a mess when we got done with the 6 cans it took me about 30min to clean it up with the vacuum. It was totally worth it!

Deb said something to me today I would like to address. She said ďItís not fair!Ē ďWhy does this have to happen to her?Ē Well first of all, why does it have to be any of these kids? This shouldnít be happening to any of our children, our childrenís, children, but it is and it will unless we step up to the plate and let some know we want it fixed and we want it fixed NOW! Second itís not fair! Not to our children not to us, not to our family, friends and strangers. But what can we do about it? We can enjoy the time we have! We can share what time we have left or what life we have. And we have to morn the lost of our child. Itís not fair. There are people out there who are killing there children because they canít handle it, or because they donít want an ex to have them, or some other stupid ridiculous bull shit reason. Why doesnít it happen to them? Because it didnít it happened to us. We have to deal with it not because we want to because we have to.

Deb is still not doing well. I see her slipping away a little more each day. Slipping away along with Mel. I can not loose them both! I will not loose them both! I will do what ever I have to do to keep her hanging on!

Melís evening has been a little better than the rest of the day. She is in a good mood and giggling some tonight. Thank you Cindy for the offer to help out with the NIC card and Router. Thank you Mom and Dad for everything you have done for us. Thank you Grammy for being there for Deb.

Thank you ALL for everything, the prayers, the cards, the packages for Mel and Devin, just everything. Please remember Deb in your prayers tonight. Please remember all our caringbridge friends and there families tonight.

God Bless you all

Melodyís Daddy

Rob

 

Update on Mel 1/11

Itís day six for rain here sunny So. Cal. I had to use my sin glasses for the first time in about 2 weekís fir about an hour. Itís supposed to let up by morning. With that said Deb, Mel, and Bammom are going to attempt a Target. Thatís right I said Target and not SUPER WAL-MART. You see Mel got a gift card in the mail and it is burning a hole in her pocket. I will be good for her to get out side the house.

Mel kept busy today with word scrambles, cross word puzzles, and of course math. She also had the TV on in the back ground most of the day. She was pretty happy for the most part of the day. I have noticed her right hand getting a little weaker the last few days. Tonight she had to use her left hand to do a little book that you need to rub with a pencil in order to see a little picture. Oh, I got paint on a few new tattoos on her arms with her new tattoo machine. We did a heart on her left arm and two cute dolphins.

Deb seems a little better today. We talked and cried about hospice tonight. But agreed that we need to see what they can help us with now. I never thought that I would see the day that I needed hospice for my little girl. Anyway Deb reluctantly agreed. I hate having to make these decisions. I hate all of this!

We are tired both mentally and physically. And I am afraid that things are getting harder and harder as the days pass.

Thank you for all the all the prayers for Melody and our family. Thank you for all the emails and GB (Guest Book) entries. Please stop by all our caringbridge friendsí web pages and drop them an encouraging message in there GB. Thank you for all that you do for us.

God Bless

Melodyís Daddy

Rob

 

Update on Mel 1/12

Mel had a good day today giggling and laughing and just keeping busy. She received a big gift from someone today. (I wonít say who because I am not sure if they want me to)It is a portable DVD player. Mel was surprised and very, very happy. To say the least she has spent a good part of the day watching DVDís. She even spent some of her medicine money at target today and bought a few new DVDís.

Mel also worked on some of her math and word puzzles. Thatís about it for today. Deb is doing ok today. We are going on Monday to a counselor together. I made the call about hospice today.

My mind goes crazy during the day with things to share with you all. But when I finally wind down from the day I loose most of it. I am going to start writing things down so I do not forget.

One thing I did want to mention is this stupid probe that NASA sent up to an asteroid today. Just so they could crash it into the damm thing and inevitably destroy it and throw away are you ready for this 330 million dollars. I can only imaging what all the cancer research companyís could have done with that kind of money. I could only shake my head in disbelief.

Thank you for all the prayers for Mel and our family and all our caringbridge friends. Good night and God Bless

Melodyís Daddy

Rob

 

Update on Mel 1/13

Mel and Deb got a late start today. So to say the least there is not a lot to talk about today.

Mel did some of her word puzzles today, watch some TV and did a little bit of math. This afternoon Deb called the doctors office to get her pain meds upped a bit because her back is hurting her. I guess my back would hurt to if I was supposed to weigh 60lbs and but in reality weight almost 140lbs. Deb also mentioned the Melís right side is swollen especially her foot. I mean really swollen. So into the recliner she went very, very reluctantly. She gets board to easy as it is. Sitting in the chair makes it even worse. She can only do her word puzzles and math at the table it is almost impossible for her to do it in the recliner.

Mel sat in the recliner for a short time and returned to the table to eat some dinner. So we will be back to the battle of her sitting in the recliner in just a little while. Deb went off the grocery store and blew the stink off she was gone about an hour and a half or so. She wasnít doing to well after she spoke to the doctors office but seems to be a little better tonight, but just a little.

To answer a question in the guest book from Jennifer, the one about Devin using the DVD player. Are you kidding me if he even looks at Mel says ďDonít even think about it Devin!Ē I am sure that after the newness wares off it she will share it with him just fine. But then againÖÖ.

Thank you all for everything you do for us. All the letters, notes, cards, packages and gifts for the kids are wonderful. Please keep the prayers for Mel coming as well as for all the children and the families. I hope you are all doing well I thank God every night for you all being in our lives and I ask him to bless you all. Thank you all of you at my work for all the information and ideas you have suggested and for all the prayers you have all told me about.

God Bless you all

Melodyís Daddy

Rob 

 

Update on Mel 1/14

Mel is eating with her left hand tonight. My heart is aching!

Please pray tonight for our strength to get through this. Please pray for Melody to not feel any pain physical or mental through all this.

She had a pretty good day except for having to sit in the recliner. I am home for the next three days so I will make sure she spends a lot of time in the recliner. I hate being the bad guy but I know in my heart it is for the best. None of us want to wind up in the hospital.

God Bless

Melodyís Daddy

Rob

 

Update on Mel 1/15

Well itís been ok around our house. Minus a few episodes of fighting to get Mel in the recliner to put her feet up.

Letís see, not really a whole lot to talk about since she is spending time in the recliner. She did do some of her word puzzles while she was at the table. She watched Charlottes Web on here DVD player while she ate today. Aunt Sissy came over to with Allison and Skye to do some valentines projects with the ladies. It was a pretty good day I guess.

Deb seems to be doing a little bit better again today. We are both very upset about Melís right side. It is just about gone completely. She does still write with it but, I did notice her switching hands to cross of words in a word search today. I was talking to her about it today and she got very upset about it not working. She said she is scared, as are Deb and I. I am not sure Devin has noticed it as of today. I will not be bringing it to attention; I will wait for him to mention it before we talk about it.

Today has been a hard day for me. I am not really sure why today is any different than another other day. I mean donít get we wrong, I have had bad days in the past but there were a lot of tears for me today, mostly in the morning while I was alone and my mind was wondering. But I made it through with a lot of praying.

Thank you for all the prayers for Melody and our family. Thank you for remembering all our caringbridge friends. Please do not stop asking our Heavenly Father for the miracle that we desperately need.

I have wanted to mention the new chat room that Stan has put up on the home page. Have any of you checked it out? Would you be interested in using it? I was thinking about setting a time to be in there so we can chat. I let you know what I come up with. There is also a new photo album on the page. Now donít get excited there arenít any new pictures as of yet, but the album is much nicer I think. And it has a slide show function you can stop and then start again, you can change the length of time each picture stays up and even how they change. If you click on the picture of Melody in the top left corner of the home page it will take you there. I sure hope it was ok that I mentioned that Stan.

Stan and his entire family have been very good to Mel and our family since this all started and if it were not for him, we would not have this great site to share with you all. Thank you Stan for all that you do for Mel and our family.

Good night and God Bless

Melodyís Daddy

Rob

 

Update on Mel 1/16 

Itís been a good day for Mel today and for the most part Deb also. The ladies (and Devin) had a very late night last night or should I say a very early morning. They finally came to bed at 1am. Now I have been going to bed some what early. I needed to catch up on some sleep. Back to the ladies and to Devin. Letís see it was about 11 when they finally woke up and got there butts out of bed. It was great they were all in really good news for the most part. Mel was in the best mood I have seen her in for not being a morning person.

Mel went right to the recliner this morning as she does every morning. After a while she wanted to have a little breakfast, so to the table she went. While waiting for breakfast she worked on one of her word puzzles. After breakfast she went right back the recliner and watched a movie. Right after the movie Mel, Mommy, and Grammy went of to the store to do some candy shopping. The candy is supposed to be for prizes for the games Mel and the cousinís play.

Later in the evening Allison and Skye came over for a couple of those games to win a few candy prizes. They are in the other room right now whooping it up like a bunch of while animals. Just kidding there just being CRAZY! Melís mood changes for the better when ever the girls come over.

Deb and I have an appointment together tomorrow with a counselor. Grammy will be going home and Bammom and poppa will be coming back up. I am not really sure if there is anything else to say. Some days are good some days are bad. I try to make them good with my good sense of humor and my GREAT looks. See what I mean. J

This morning I went through the guest book and found all the links that have been left in there. I placed them in the home page under Melodyís friends. If I have added your child please check it. If you would prefer a different title email me and I will be more than happy to change it. If you prefer I take them off the list let me know I will understand. I added 33 kids most with some kind of cancer. Some of those have already been called home. I also added Angel to some kids that already had links. It was very difficult to add that word. We have followed some of these kids for sometime. You get to know them, they become apart of your daily life. And although we did not know them for very long before there calling, it still hurt. You feel some sort of loss in your life. I loved to read about there adventures. I would check on them everyday. I would worry about them.

You see I know how you all feel. I did and still do today all the things you do. I hope that you never have to feel the pain that I feel in my heart today. The pain of loosing one of your children. To those parents that have lost a child and those facing it today, I would give anything so you could keep your child, as I would do for Melody. ANYTHING!

Thank you for all the prayers for Melody and our family. Please remember all of our caringbridge friends and there families tonight. Please help us to find a way to not add anymore of our kids to that list on the home page.

God Bless

Melodyís Daddy

Rob  

 

Update on Mel 1/17

Another pretty good day for Melody but not so good for Deb. The counseling we went today I hope has helped her in some way. The counselor we saw today was great. You see she had lost a child that was in her teens. She understands what the feeling are and where they come from. She also told us that the road ahead is a long. She spoke with us about some other things that I think (I could be wrong) gave Deb some sort of calming affect. I know this sounds crazy and would rather not go into details right now but maybe some day.

Well enough about us on to the princess. Mel did a lot of word puzzles today and spent some time (not as much as would have liked) in the recliner today watching TV. OH and she was on the internet today with the laptop. She went to Barbie.com and Poly Pockets.com. It was a little difficult for to use the mouse with her left hand but she managed pretty well. She got a little frustrated after awhile so she decided to have a bite to eat. Allison and Skye came over for a brief visit tonight. They played princess Yahtzee and go fish. Mel was in a pretty good mood most of the day today.

Our long weekend was uneventful. We did a whole lot of nothing for the entire weekend. Bammom and Poppa came up this afternoon and Grammy returned home. Devin will go school and I will go to work. It all sounds soÖ.normal. But its not Bammom and poppa should be at home and Grammy should have already been there. It should be, Devin AND Mel heading off to school. And both Deb and I going off to work. That is NORMAL is supposed to be. But it is not, not anymore. We just wait and wait and wait. As another day passes we lose a little bit more of Mel! And a little bit of our selfís!

Good night and God bless

Melodyís Daddy

Rob

 

Update on Mel 1/18

It was a beautiful summer like day here in Southern California. Unfortunately Mel didnít get outside to enjoy it. She just hung around in the house. Mel worked on her word puzzles ALL DAY LONG. Thatís it thatís what she did today. Oh and watched cartoons. Nurse Mary, the School district head nurse came by for a visit and Mel was pretty giggly. We watched American Idol tonight and we ALL got a few good laughs from that. Now do not get me wrong. NO WAY would you catch me up there.

She doesnít really seem like herself today and tonight she was writing with her left hand. We went up 1mg on the steroids with the thought that it will give her a little use of that right hand. Thatís about the only change we have noticed as of right now.

Well I guess thatís about it for now. I was thinking about setting up that time and date for the chat room thing. I figured it would have to be sometime between 4pm and 5pm my time. That would give everyone the opportunity join in if they so desired. I guess it would be kind of a Q and A type thing. Iíll pick a day one day next week and let you all know. Most likely the last part of the week. Oh, I have been getting a lot of email and will catch to you all as time permits.

Thank you for all the prayers for Mel and our family. Thank you for all the prayers for all our caringbridge friends. Please keep them coming, for all of us, they are much needed. Tonight I leave you with this.

"Let the little children come to me and do not forbid them; for such is the Kingdom of God." Mark 10:14

Good Night and God Bless you all!

Melodyís Daddy

Rob

 

Update on Mel 1/19

Well Melís day was pretty much the same as yesterday. I didnít hear her laugh as much this afternoon as she has the past few days. So Mel pretty much did word puzzles today. And to the best of my knowledge she hasnít spent any time in the recliner except for right after she woke up. Oh and course she did watch cartoons.

As for DebÖ.what can I say! She told me tonight she is afraid for Mel. Afraid for her feeling pain and being scared. I can only be there for her and listen, there is nothing I can say or do. I just donít know what to do or say! I feel those same things, I just deal with them in a different way. One way is prayer, and a lot of it! You have no idea!

I think these kids know what is happening. They know in someway, in there own way, what the out come is going to be. I think that they know when it is time. I asked Mel tonight ďWhat do think is going on with that hand?Ē She said ďI donít know.Ē But I could tell that she has an idea. I then asked her ďDo you have any questions for me? Anything you want to talk about?Ē So in true Melody form she said ďWhere do babies come from?Ē Now can you guess what I did next? Iíll bet you think I went and got Mommy. Nope. I said ďMommyís tummies.Ē She said ďI know that Daddy.Ē I said ďWhen Mommyís and Daddyís love each other so much that they want to share it with babies.Ē I think that went pretty good.

I wish I could make this all go away. Thatís supposed to be my job. I used to be able to fix anything. I know in my mind that we will get through this no matter how long it will take. But my heart tells me other wise. It tells me that things  never be the same and that it will always hurt. I just wish I could do something for my wife and for Devin. I have a feeling of helplessness. I have never felt that before in my life and it really sucks, BAD!

Thank you so, so much for everything you do for us. All the prayers, cards, packages, guest book entries, emails, and prayers. Please donít forget to check in all our caringbridge friends. Please pray for a cure for this horrid beast we call cancer that consumes so many, many lives.

Melodyís Daddy

Rob      

 

Update on Mel 1/20

I am sorry but I do not feel like doing a long update tonight. Mel is doing fine she had a pretty good day. We had a rough night last night putting her to bed she was in a lot of pain, it was in her back.

Deb is a mess today! I am not sure she will be able to get through it all at this point. Everyday she gets worse! I will only be in work a few hours tomorrow in order to be at home. My mom will hold down the fort until I get home.

Devin is handling things pretty well. For a 10 year old boy who notices everything I am very proud of the way he is handling it all.

Thank for all the prayers! Please, please ask our father to give Deb strength to make it through all of this.

God Bless you all

Melodyís Daddy

Rob

 

Update on Mel 1/21

Well Mel has had an up and down day. She was upset this morning when Deb and I had to leave for an appointment. When we returned she was ok, she was working an object search book. After that she was ok for awhile and then later in the day while trying to convince her to put her feet up in the recliner she had what I would call a serious breakdown. She had a fit like nothing I have heard in a long while. She did wind up staying in the recliner for about 2hrs or so.

Later in the evening Curt and Megan came over for a visit and later even, Allison and Skye came over for a visit. They all played a couple of different games until about 10:00 and Aunt Sissy came over for the girls and Curt and Megan went home.

I do not want to get into details about Deb but I can tell you this. Things are worse then you can ever imagine. And to the person that knew what was happening. If you EVER and I mean EVER hold anything like that back from again you will no longer be welcome here. If you think I am kidding and wonít do that, TRY ME! That was twice, you do not want it to happen again. Things were somewhat better today with Deb.

Mel has lost complete use of her right hand and it is very, very hard for her to walk to and from the restroom. However she is adapting pretty well. She does all her word puzzles and even changes the TV channel with that left hand. I have been telling Deb for sometime that these kids have a gift, the gift to adapt.

I wonder how much more I can take. My (our) entire life has been turned upside down. Just when I think things are leveling off a bit someone shakes me up and turns me upside down again. I never thought that these things could have happened in my life. But they are. In some ways I wish things were over but in other ways I want them to return to what they were. My heart and my mind are so mixed up I do not know what to think or do or even say sometimes.

Thank you for everything. God night and God bless

Melodyís Daddy

Rob

 

P.S. - My sister has arranged a fundraiser. You can get the information on the events page. Thank you Sis I do not know where we would be with out you!

 

Update on Mel 1/22

Well toady was ok I guess. I went into work for a few hours to catch up on some paperwork and the ladies slept in until almost 11am. When I got home I loaded Devin up in the truck and headed off to his counseling appointment. We went from there to Target to pick up a few items and a gift for a birthday that Devin is off to tomorrow. (HaHa I know what your getting Jordan) Then Devin was starving, well he thought he was. So off to the taco shop for some rolled tacos. We brought it home since we had been gone for awhile. And surprise, when we arrived at the house there was Curt cleaning out the inside of the car. (Thanks Curt the car looks great and mean really great) So I warmed up some pizza and enjoyed the company.

Now mind you Devin and I were already out and about and checked to see of anyone wanted anything, Shortly after arriving home Mel decided she wanted subway (Plain turkey, thatís turkey and bread), So off to subway went Grammy to get that sandwich. While Mel enjoyed that exciting sandwich Deb was relaxing in the recliner and spending some time visiting with her mom, Devin was playing a new Xbox game he got in the mail. (Thank you, you know who you are. The game was perfect)

That brings us to this evening and tonight. Not only did Curt do up the car like a pro, he bought dinner. Beef itís was on the grill. Mel wanted pizza for dinner so that what she got. Megan and Mel did a few crossword puzzles before Curt and Megan had to head home. Mel is at this moment still doing crossword puzzles.

I can not thank you all enough for all the emails and guest book entries. Thank you all so much for all the prayers for Mel and our family. And although I havenít been able to visit any our friends this week they are all in need of prayers for one thing or another. Tonight I ask you to visit them and send them some of those wishes and prayers. Where would we be with out you all! Thank you all again so much, good night and God Bless.

Melodyís Daddy

Rob 

 

Update on Mel 1/23

WOW, early update tonight! Mel had an ok day today. Nothing really to talk about, but even when she woke up she was in a pretty good mood. Deb was also I a pretty good mood this morning. Mel went right to the kitchen table this morning. Thatís a first in a long while. Usually she goes right to the recliner, but no this morning. She worked on a few crossword puzzles and then had a little breakfast. Then she decided that it was time to watch a move, so into the recliner she went. Lets see she watched Tom and Jerry, she said she bought that one because it makes Daddy laugh. She is right I really like that Jerry. She spent a good couple of hours there.

Grammy went home in the afternoon. Mel just kind of hung out at the table doing her crossword puzzles in the afternoon. Allison and Skye came over for a visit this evening. Mel is eating KFC and the girls are coloring some Sponge Bob pages we printed off the internet. I think we will all try and get to bed at a decent hour tonight.

I have been reading a book that Roy, Cheyenneís dad sent us. One thing that stood out is this (My mom actually found it but I would have to agree). We are not a body that has a soul. We are a soul that has a body. There for people donít die: only our bodies die. A few of our bodies are defective when they are new and they break down quickly. I guess one way to look at it is. Our souls continue on only or physical sense is gone. As much as I will miss Melodyís body, her soul will still be alive. Touching our lives, and many, many others. More lives then we can ever imagine. It doesnít make the pain go away but, in a small, and I mean small way, it does give me comfort.

Deb had a few couple good moments today, but mostly a down day for her. I love her so much! I want so much to take her pain away from her. To make her laugh and smile. Some times she will force a smile. The other night Mel had her laughing and smiling while getting ready for bed. And just for a moment, a very quick moment, she was back again. Melody was a chatty Kathy that night. Just like in the past. It was a wonderful moment. And then back to reality. How I hate this reality!

My life does not ďsuckĒ. This moment in my life sucks. And in the big picture of life this is all just a moment. I have had, and will continue to have a great life. Living it to the fullest! And when I think of Mel and all that she has gone through and will go through, I will celebrate life with her today and in the future, we (Mel and I ) will celebrate life together, FOREVER!

God bless you all in many, many  great ways! Thank you all for everything you do for us, but thank you especially for the things you do for Melody, Devin and Deb. Keep the prayers a coming.

Melodyís Daddy

Rob

 

Update on Mel 1/24

Mel day has been ok. She has worn her feeling on her sleeves today. Most of the day has been spent on the word search puzzles today with the TV on in the back ground. Mel, Deb and I managed to walk down tot SUPER WAL-MART this afternoon to pick up a few items. That about wraps up her day. We are down to San Diego for clinic tomorrow.

Deb also did ok today, we had a counseling appointment today. I am hoping to get her out of the house for a few hours on Wednesday. Just take a ride .and get her out of the house.

My folks have writing a letter and asked me to share it with you. SO with that said I will leave it you it. Thank you for all that you have done.

God Bless

Melodyís Daddy

Rob

 

Message from Bob & Terry

We want to give a Big Hello, and Big Heart Felt Thank You!  To all over our family, Friends and friends that we have not met, and who overwhelmed us more that words can say with all the Love, Prayers, and Support that has been given to Melody, Devin, Debbie & Robbie.  Sorry it has taken us so long to send this note our only excuse is dealing with live on a daily basses.  We are sure you all can relate, Bob being very busy with his new job as a District Deputy for the Knights of Columbus, and Terry who is always traveling back & forth from San Diego to Hemet making new dresses for Melody and taking time to help with the house work.  All we can say is there is NO WORDS that can describe how we feel to our family about the terrible disease that has stricken Melody.

We can not imagine what our Robbie & Debbie are going through, we can only hope they know how much we Love them and that we are there for them. We do believe in miracles and if God willing Melody will receive her miracle.  Please keep those cards, guestbook entries, and prayers coming. Every time before Debbie or Robbie picks up the mail Melody guesses as to how many letter, cards or packages she will receive today. It is a highlight of her day. When the mail arrives every thing is shut off and Debbie reads all of the cards, and letters that have come.  If melody receives candy in a package she invites her cousins over to play bingo, and the winner receives candy as a prize.  You should hear all the giggling that goes on while playing the games or doing the word searches.

I know that in the past a request for prayers for a miracle has been asked, I only ask please continue with those prayers.  We feel that the medical community has pretty much written Melody and the other children diagnosed with her disease off. There needs to be SO MUCH more for these families. From Doctors willing to step outside of the box, hospital staff, pharmaceutical companies, insurance companies and support staff. Why spend so much on space exploration when our future, children, are being treated as second class citizens when stricken with severe illnesses. Charity begins at home.

Thank You for making Melody smile and giggle.  Some where down the road there is work being done to raise money to replace the income lost due to this monster of a disease. I hope we are able to plan something that appeals to most of you and you may find it in your hearts to lend a hand. Donít forget Melodyís dollar Map. If you have not sent a card from where you live; please do so. (Check out Melody dollar Map) Fellows with the Knights of Columbus, hold a fundraiser. All help is truly appreciated. Harmony Elementary is a terrific support sending meals and overall support. Thank you all. We have started this thank you message many times and it has yet to be posted. Something always comes up or we need to add or change some information. Rob mentions he wants to mail a personal thank you to each and every person who has touched Melodyís life. Be patient and I am sure it will happen. However Terry and I want to let you know how much we truly appreciate each and every one of you for your support for our family.

Poppa Bob and Bammom Terry

 

Update on Mel 1/25

Sorry about last nights update, missing words, misspellings etcÖ I was half asleep when I wrote it. I read it this morning and, DOH!

Tonightís update is not going to be very long again I am exhausted as are Mel and Deb. It was clinic day. I met the ladies at 11:00 and we didnít get out of there until 2:30 and back to the house around 4:00 ARGG! Melís counts are good. We will start a new kind of chemo, well new to Mel. Itís called VP16. Her Doctor thought since we were going to continue with chemo we might as well try something different. The side affects are similar to the Temador, little if any at all. She will start it tomorrow. Melís feet are very swollen and I mean very. The Docs are concerned. They are going to talk amongst them selves and figure out what to do.

Mel is very emotional today as is Deb and I guess me to. It has been a very, VERY long day and we just need to get some rest. I am sure my girls will sleep in tomorrow, as they should.

Thank you for al the prayers for Melody and our family. Thank you for all the cards and packages for the kids. I am so sorry I havenít been able to go by all our friendsí web pages. Just know that I think of each and everyone of you everyday, and say a prayer as well. Please continue to pray for Melodyís miracle. If is not to be please pray for her comfort and for here peace of heart and mind.

God Bless

Melodyís Daddy

Rob

 

Update on Mel 1/26

Well letís see. Itís been a rainy day here, I am not complaining however. We sure do need it.

Not much to say about the stinkerís day. Crossword puzzles, TV and a movie. She did sit in the recliner more today. Now that is a good thing! She just isnít happy any more. She is no longer that happy, outgoing, little girl she once was. That is heartbreaking. You have no idea. I wish you all knew her a year ago. You have falling in love with her just the same.

Deb seemed much better today. Devin had a pretty good day. My days well the all just kind of blend together most days.

A couple of months ago (give or take) or microwave stopped working. We were using a little bitty one that we made due with. Well today it was replaced. Thank you so much to Loweís and everyone involved. I could not believe it when we were told! WOW! That was amazing.

I am sorry I do not have more to say tonight. I am very, very tired as are Deb and Mel. I donít have anything special tonight. The only thing I can think of is, Thank You! Thank You very, very much.

God Bless you all

Melodyís Daddy

Rob

 

Update on Mel 1/27

My little stinker had pretty good day. Again she didnít do much and she seemed to be more tired than normal. As a matter of fact she just told us (at 7:30) that she is very tired. Her feet are still very swollen and she hasnít spent much time in the recliner until this evening. I told her that this weekend I was going to see Uncle Wayne, he is not really her Uncle, but he has been apart of our family for 20 years or more. We met him when I was in high school. He has become apart of our family and we his family. Now we both have our own beautiful family to share with each other. Any way I asked her is there anything you want me tell Uncle Wayne? She said ďYea tell him he is Uncle Stinky!Ē I will have to get into that another time. I mean I donít want to embarrass any one, do I Uncle Stinky?

Deb and I went to counseling this afternoon it went well. She has been in a great mood most of the day until this evening when she got flustered. I can take some of the blame for that. I walked over to my sisterís house for a few minutes to drop something off and pick up a package for Mel. I was not right there and she needed help. Sorry sweetie I love you KISS, KISS, KISS.

Well that about wraps up the day for Mel and Deb. Devin and I had a pretty typical day. Deb has another appointment tomorrow that I will take her to. I didnít get to take her out on Wednesday as I had planned, so tomorrow after her appointment we will be going to lunch, and maybe a drive up a mountain. I keep eyeballing a road that goes up a large hill and would like to see where it goes.

I have received a bunch of email the last couple of days and will do my best in sending response to you all (No promises). I read each and everyone and appreciate all the information. I do look into everything that you send me time permitting. Also all the well wishes and love, and prayers are never ever taken for granted. Everyone is special to us and a prayer said for the sender. And of course, a thank you to God for sending you to us. I thank God each and every night for you all. Just knowing that all the love and prayers make things just a little bit easier.  

Thank you, Thank you all for everything you do for Mel, Devin, also for Deb and me. All the cards and guest book entries are so wonderful. All the packages for the kids are spectacular. I can not even begin to explain to you what it all means to us. I hope to some day to send each and every one of you a personal thank you. It may take awhile, you see there are literally thousands of you to thank. My typing is slow and steady and my writing is even worse, talk about writerís cramp.

Good night friends, old and new alike. God bless each and every one of you.

Melodyís Daddy

Rob

 

Update on Mel 1/28

Ok, so this update is actually being written on the 29th. I was up yesterday at 2:30 and it was a very busy day. And when I finally stopped I was out like a light. So here is all about yesterday.

Mel and Deb got up around 9 and Mel went right to the recliner. Deb and I had an appointment at 11:00. Mel relaxed in the recliner until it was time for Mommy to leave and then went to the table. Bammom stayed at home with her. While Mommy was gone Mel did a bunch of word puzzles.

I left wok and met Deb for her appointment. After her appointment we went to lunch and for a drive up that road I was talking about. WOW! You should see the homes up on this hill amazing. Well someday. While we were out the hospice folks called me. I have been working on this since Monday to get things set up. However our primary care provider will not authorize hospice out side of San Diego County. So I have been fighting with them. I filled a 72hr appeal today and if they do not authorize it they are not going to like me very much.

We meet with the hospice people at 2 and discussed what we need and what they can do for us. And actually they were sending a nurse out to meet with us and check out Mel. Then we ran into another snafu. They will not come out to the house until Mel is no longer on the chemo. Now if we stop the new chemo there is no longer any hope. If there is no hope what is there? As little hope as it is, we need it. I signed the DNR today and up until that point I was ok with it all. I am not really sure what kept me from losing it.

So here we are 4 in the after noon and I am just beat. But there is still more to do. Bammom and poppa were on there way out the door to head home. (In the rain) I had to go to the pharmacy to get some prescriptions filled for Mel and Deb. Two pharmacies later I got what we needed. Home I went to relax right? Hehehe, are you crazy Deb wanted Mexican for dinner and we need to go pick up one of the scripts, so off she went to get that and I stayed with Mel and hung out. Dinner hit the spot and at about 7 I hit the couch. That brings us to this morning. The 29th not the 28th Hehehe Ahhh! I need that. The ladies woke me at some point last night to help get to bed I think it was almost 1am but I could have been dreaming.

Mel, what a little stinker she is. She just loves to receive your mail. ButÖ.She is pretty much down to just doing word puzzles, eating and watching TV and movies. Do not get me wrong she loves all the gifts and gets excited about opening them with Mom or I. But she is not playing with the toys and what have you. Since she is not playing with the things you have been sending, there is no need for you to be spending the money.

I have noticed the last few days that the right side of Melís face is starting toÖI will say fall. I havenít mentioned it before because I was not sure if Deb had noticed it. When I say fall it is like if someone has had a stroke. Paralyses! Her feet are still VERY, very swollen the right more then the left. She is going to have to spend most of the day in the recliner. It is going to be very difficult for her so I am not expecting it to be a great day. She has also been having a hard time going to the bathroom this week. Deb and Mel chalk it up to not eating much but i donít think that is what it is.

What a crazy day it was. Thank you for being here with us. Thank you for all your gifts, cards, and messages in the guest book.

God Bless you all

Melodyís Daddy

Rob

 

Update on Mel 1/29

I did it again didnít I? Mel is doing fine I was just very tired. I will write more tonight. Deb is also doing ok. I wasnít home for most of the day yesterday. As far as I can tell it was a good day. The ladies didnít go to bed until after 1 in the morning.

God Bless

Melodyís Daddy

Rob

 

Update on Mel 1/30

There is no curative Medicine for Mel or any other child like her. The Medical community (doctors and pharmaceutical companies) has written them off like a sick dog. ďWe will just try to make them comfortable until the time comes.Ē Thatís it? Thatís what we get? Are our children not worth it to them, to try everything possible to make them better? To spend as much money as possible to find a cure for our children? How can they stand by and let them suffer like this? To let us parents suffer like this? Maybe if it were there child or grand child. Maybe then things would be different. Is it because there ore only 2500 kids a year with this DX? Oh, maybe itís because there is no money in it for them! Thatís what itís all about right! Like if a car doesnít sell to enough people or there is no interest in it, they just discontinue the model. MY DAUGHTER IS NOT EXPENDABLE; SHE IS NOT A CAR MODEL OR A SICK DOG! CAN YOU NOT HERE US? WHAT DO WE HAVE TO DO TO GET YOUR ATTENTION? HOW MANY CHILDREN HAVE TO DIE FOR YOU TO PAY ATTENTION? YOU FUCKING SUCK! I HATE YOUR GUTS! GO TO HELL IF YOU DO NOT WANT TO HELP US! Now that you know how I really feel, bite me you bastards!

To the first person that says ďItís not there fault, they are trying there hardest.Ē That is bull shit, shut up, or I will hunt you down and put a world of hurting on you. And that hurt will NEVER, EVER equal the pain that we as parents are feeling today and everyday of our lives.

Mel has lost complete use of her right side as of today. She can not lift her arm and she can not walk unless you hold her up. It has been a real crappy day for her and us. We just want her to be happy, to smile, to be a little girl. She will never have that again! No here, not with us.

Thank you for all your prayers. God Bless you

Melodyís Daddy

Rob

 

Update on Mel 1/31

I am having problems with my connection so this will be down and dirty. ARGGG!

So here is the deal. It has been a bitter sweet day. We started hospice. Wheel chair, oxygen and visits every other day. Mel had a big scare today, while returning from the restroom she got a really bad cramp in her right leg. It is no longer working at all. After that Deb and I had a really long talk with her.

Have you ever had to tell your child that you have tried everything you can think of but there just isnít anything out there to make you better? Well let me tell you it sucks with a capitol ďSĒ. Now we know she must have some idea what is happening. She did kinda. To say the least she is ok with it. Thatís more than I can say for Deb and I.

It has been a very emotional afternoon. My heart is even more broken today than yesterday. (if that is possible) There is not much more to say. Thank you for all the prayers, God Bless you all.

Melodyís Daddy

Rob

 

Update on Mel 2/1

Most nights I sit down to write the update I have know idea what I am going to say. Some nights I have something in mind or, something on my mind. Itís usually the long ones that I have no idea what to say. Kind of funny isnít it?

Mel had a pretty good day all things considered. She has been sitting in her new chair (wheel chair) at the table which keeps her feet somewhat elevated. And she has been sitting in the recliner also. About 50-50 or so I guess. She had lots of giggles today which donít really come out giggles so much anymore because of the loss of the right side. She is still eating and drinking ok. And today getting from the recliner to the chair and back has been a little bet better. She even managed to tell on Devin tonight and told be to kick his butt. So what was I supposed to do? I kicked his butt! He loves it, every minute of it.

Getting her into her night time recliner was a little rough but she did it. What a stinker. We love our children oh so much.

I havenít been by any of our caringbridge friends lately. And I havenít asked you to pray for them either. There is not a day that goes by that I donít think of our friends and there families, or a day that I donít ask Jesus to heal them. I see all of you parents come by and leave a message in Melís GB. Thank you for that and for your emails. Thank you everyone for that! I also have seen some new web pages to add to Mel friendís area. Thank you for coming by so we can share our little princess with you.

Yesterday we told Mel how special she was to be able to go to Heaven. Today I kept calling her my special girl. I keep telling her that I love her so much. I always ask her ďDo you know how much I Love you?Ē Of course she says yes or just nods her head. I always tell her to think of the furthest place in the galaxy and it is much, much further than that. DO you think she has any idea how much we love her? Will she ever know? I hope that on the day she goes to the Heavens she will know. And that we have done everything that we can think of and more to make her better. And that up until the day that she leaves us we did everything that we new how.

Please donít forget all the other children and families. Please say a prayer for all the parents that ore missing there children so much. And for the parents and children who are dealing with a poor prognosis for the fist time tonight. There are way too many. Please pray for our Melody that God find some way to let her stay with us. And for the strength for us to get through this everyday.

God Bless you all.

Melodyís Daddy

Rob

 

Update on Mel 2/02

Happy birthday to my niece Sarah, 17 years young, man O man do I feel old! Thanks for coming over to spend the evening with Melody on your special night.

Mel had a great day today. She was a little bit upset when the home health nurse came over to shampoo her hair but soon relaxed and enjoyed the massage. Most of her day was happy and silly. However this evening she had what we know was a panic or anxiety attack. All of the sudden her breathing became very labored almost like hyperventilating. I thought that was it. I was very scared and then realized that her color was good and that her pulse was also good. She was already on the oxygen so it was time for Daddy magic. So I began to talk her down a bit it worked some what but not what I was hoping for. We had already made a call to hospice and they were on their way. By the time the nurse arrived she was almost back to normal breathing. When she saw the nurse it was right back to square one. About 45 min or so after the nurse arrived she was fine. I have to mention that even while all this was going on she was still being silly and trying to let us know she was ok. She was sticking her finger in her in Mommyís nose, smacking me in my face and doing that thing you now pointing at her eye, and then pointing at her brain, pointing at her Mommy, and then holding her nose. Did you get it yet she was saying ďI think you stink!Ē What a stinker! I will never forget that. In a time of crisis for her umm I mean us she was telling us (in her way) that it was and she was OK. As of tonight she is just fine giggling and laughing and getting annoyed at her brother. The hospice nurse said that she is looking much better than she was on Monday.

I have to mention a couple of the guest book entries Lisa you have a way with words. We are going to get along just fine, I knew that from the first time I found Savannahís page. We are like two peas in a pod. And Angela, Calvin's Mom. That is my prayer almost word for word. Even the part that mentions him losing a son. It is as if you crawled into my mind and pulled out the words one by one. Melody has always said that she is going to marry me some day. As I was reading it I could not control my emotions. Just thinking about it now, I have tears running down my face. How true it is that I am saying the exact same thing. I will end this update with that prayer.

Now on to another thing from today. Hospice! The hospice that we are using, Odyssey Health Care. Apparently their corporate office isnít sure if they want to take on Melodyís case. HUH? Yea, thatís what I said! I guess that they donít handle children ďVery oftenĒ and they are ďUncomfortableĒ with the severity of the Melodyís condition and the type of tumor that she has. Just as Mel and the rest of our family were getting comfortable with the whole hospice thing I get wind of this. Boy O Boy wait until I get someone on the phone tomorrow. They are going to wish that the have never heard of the Schleighís. What a bunch of insensitive assholes! And donít think I wonít tell them that among other things that come to mind. Please do not get me wrong. Everyone that I have spoken with and dealt with out the office here has been wonderful. It just sounds like a Corporate thing. But I will handle these suits.

With that said, Thank you for everything you do for us, EVERYTHING!

God Bless you

Melodyís Daddy

Rob

 

Hello God, it's me again. 2:00 a.m., Room 304.
Visiting hours are over, time for our bedside tug of war.
This sleeping child between us may not make it through the night.
I'm fighting back the tears as she fights for her life.
Well, it must be kind of crowded,
On the streets of Heaven.
So tell me: what do you need her for?
Don't you know one day she'll be your little girl forever.
But right now I need her so much more.
She's much too young to be on her own:
Barely just turned seven.
So who will hold her hand when she crosses the streets of Heaven?

Tell me God, do you remember the wishes that she made,
As she blew out the candles on her last birthday cake?
She wants to ride a pony when she's big enough.
She wants to marry her Daddy when she's all grown up.

Well, it must be kind of crowded,
On the streets of Heaven.
So tell me: what do you need her for?
Don't you know one day she'll be your little girl forever.
But right now I need her so much more.
She's much too young to be on her own:
Barely just turned seven.
So who will hold her hand when she crosses the streets of Heaven?

Lord, don't you know she's my angel
You got plenty of your own
And I know you hold a place for her
But she's already got a home
Well I don't know if you're listenin'
But praying is all that's left to do
So I ask you Lord have mercy, you lost a son once too

And it must be kind of crowded,
On the streets of Heaven.
So tell me: what do you need her for?
Don't you know one day she'll be your little girl forever.
But right now I need her so much more.
Lord, I know once you've made up your mind,
There's no use in beggin'.
So if you take her with you today, will you make sure she looks both ways,
And would you hold her hand when she crosses the streets of Heaven.

The streets of Heaven.
        

 

Update on Mel 2/03    

Mel had a pretty good day today and bed time last night was uneventful. She is feeling pretty good and the swelling in her feet is slowly getting better. With the swelling going down it is making it a bit easier for to stand on her feet. She has been very chatty today and even more so tonight. She hasnít eating much today but tonight she is making up for it, two big bowls of spaghetti and bread. Man O man I can hear her in the other room chatting up a storm. It is getting more difficult to understand her especially in the evenings.

I didnít get an opportunity to speak with the Hospice corporate offices as of yet and that is probably lucky for them, it gives me a little more time to settle down about the while thing. I was able to speak with someone from the local office this afternoon. They called to tell me they think that have found a Home Health Care for Mel and they may have found a Hospice for her. I sort of told her how upset I was that they let things get as far as they did and Mel will have to adjust to yet another change. ARGGGG!!!

Mel has been working vigorously on her word search puzzles with the TV on in the background. It has been a pretty good day for her. Deb on the other hand for the last couple of days seems like she is not here. Come to find out she hasnít been taking her Meds. So I told Mel to make Mommy a deal. If Mommy takes her Meds Mel will take hers. HEHEHE ;-)

Thank you for all the prayers for Melody and our family. Thank you for all the GB entries, cards and packages. Thank you for being in our lives.

God Bless You All

Melodyís Daddy

Rob

 

Update on Mel 2/04     

Oops fell asleep on the couch, again. Mel had a pretty good day today. She slept in until about 9:30 or so. When she got up she went right to the table to her word search puzzles. She hasnít been eating right away she waits until later in the day. Now of course she had the TV on in the back ground all day, either cartoons or a movie. She had a couple of those breathing attacks today neither lasted as long as the first one. We had her breathing into a paper bag for the second one and it seemed to help very little so we had her sit in the recliner and put on the oxygen. She was much better after a while.

Mel had some very Melody moments today. At one point in the restroom she was singing her Mommy a song about ďI love you, I love you, you are the best Mommy in the world.Ē She was being silly for a good part of the day. And at one point she yelled, very loud if I may add, at Devin. Then he called her a name and she called him a name. It was great!

She has been having a hard time using the bathroom today at one point she was sitting on the toilet saying she could go pee and gave up after a while and when she got up she had gone but just didnít know it. Pooping is becoming harder fro her to do also. Now she has changed her diet from KFC to Spaghetti and I am sure that has something to do with it but no entirely. She will get some Meds to make it easier for her to do that today.

Deb was pretty good today a couple of times she appeared to ďnot be hereĒ and I kept for getting to ask her about her Meds. But overall I think she is doing pretty well as things considered.

O how I love my wife and kids my heart aches for each of them. I wish I could just make this all go away for them. I know I have said it before but Iíll say it again. I would do anything for Mel and any of the kids that are ill and I mean anything, Even if it meant taking on there illness my self. If I could take it away from just on of them I would no matter the cost.

I do want to mention that we meet someone that follows Mel today. Jackie, she drove all the way from corona today so we could sign some papers to secure a loan. She saw our last name come across her desk and figured it all out. She volunteered to drive out to us an hour our more to sign. Thank you Jackie for that and Iím glad Mel was ok with meeting you. O and sorry for the bums rush out the door but she had to go potty. 

Thank you for all the prayers for Mel and our family and for all our caringbridge friends. Thank you will never be enough for all that you have done for us.

God Bless you all

Melodyís Daddy

Rob

 

Update on Mel 2/5

Mel is not doing very well tonight! At about 6:30 she was starting to get very sleepy. She was having a hard time keeping here eyes open. The hospice nurse was already on her way just to check on her. Her BP, heart, and lugs are fine. No temp but she had a head ache. She is resting quietly in the recliner since.

Her eating the last few days has been dismal. She was in a good mood up until 6:30. She did some word puzzles and watched some TV.

I took Devin to a Birthday party this afternoon at the bowling ally we both had a great time. A little later Curt and I played a little football game in the street just outside the house with the neighborhood kids. Deb and Grammy were in the house with Mel.

Iíll let you know in the morning how my little stinker is. I am sure she will be ok maybe she is just tired. The nurse said she is doing well and that maybe she is just very tired. When you call her name she opens her eyes and says ďWhat!Ē

Thank you for coming by to check on my little princess. Please continue to pray for Mel as well as for us. Good night.

God Bless

Melodyís S Daddy

Rob

 

Update on Mel 2/06 - 12:30pm  

Mel has not been awake for any significant amount of time since about 5:00 last night. She does wake up when you call her name and will answer your question easily, with attitude I might add. The nurse was here a few Min. ago and checked her BP it was 144 over 102. She checked it again after some oxygen and it had come down a little to 132 over something, I really cant remember the second number. We also gave her a Vicodin hoping that will make any traces of her headache disappear and make her want to wake up. She said that she couldnít swallow her Meds but she did do it with a little bit of coaxing.

I will update you all later this evening if anything changes. If you do not here anything things have remained the same, sort of no news is good news. Although I cant think of anything good in this, hence the sort of part.

Keep praying, God bless you

Melodyís Daddy

Rob

 

THIS IS MELODY'S AUNT SISSY

I ASK THAT YOU LIGHT A CANDLE FOR MELODY TODAY

Karen

 

Update on Mel 2/06 Ė 7:30pm

Mel was able to wake up around 2:30 and sit to the table to do some word puzzles. She had sort of a blank stare in her eyes and was not able to concentrate for very long on each puzzle she tried. She managed a couple of little laughs at Americasí funniest videos animal edition. And even said our cat Mr. Fuzzy bit her nose last night. She even said at one point she was hungry and wanted spaghetti. She was not however able to stay awake until it was ready. She was awake (kind of) until about 5:30, and wanted to head back to the recliner. She is again sleeping comfortably in the recliner with her oxygen on.

Leslie brought up dinner from San Diego and Aunt Sissy, Allison, and Skye came over for a visit. Mel was aware they were here. The mood here is somber but somewhat upbeat.

I will not update again tonight unless something significant changes. Please keep your candles burning and the prayers coming. Thank you all and God Bless!

Melodyís Daddy

Rob

 

THIS IS MELODY'S AUNT SISSY

I ASK THAT YOU LIGHT A CANDLE FOR MELODY TODAY

Karen

 

 

Update on Mel 2/07 Ė 11:40

Well the little stinker woke up last night for about Ĺ an hour at around 11:00. Deb and I were just getting ready to climb up on the couches for so sleep. She decided she wanted to sit to the table for awhile. She was awake for 20 or 30 min. and then we decide to get her back in the recliner.

She slept all night and was sort of awake this morning. About 30 min ago she woke up and has been awake since. We listened to the Beach Boys greatest hits and right now, she is very comfortable in the recliner watching Rugrats and snickering about it every now and then. Deb was about to look and see what else was on for her, just then another Rugrats was coming on and she snatched the remote out of Debs hands.

She hasnít eating anything since Sat afternoon and has no appetite. She is not drinking as much as I would like her to but, what are you going do. I know it is important but I am not going to force her to something she doesnít want to do.

Our pain is unbearable at times. But at other times a peace comes over us. Mel is in no pain and is aware of her surroundings. We have been talking about all the fun stuff we have done together and all the silly things she done and said.

Please keep the prayers going and the candles burning. We can feel the love and the prayers from around the world. We have a Guardian Angel candle lit for her on the table that she can see. While you are praying for Mel please do not forget all of our caringbridge friends, and the families with out there children.

Thank you for all your support and prayers.

God Bless You All

Melodyís Daddy

Rob

 

THIS IS MELODY'S AUNT SISSY

I ASK THAT YOU LIGHT A CANDLE FOR MELODY TODAY

Karen

 

 

Update on Mel 2/07 Ė 8:30

Shortly after the last update Mel went back to ďSleepĒ She did stay awake long enough to watch the entire Rugrats. Not much has changed, she is in and out. She is in no pain. I have managed to get her to drink more water in the last few hours than she has in the few days. Next step some soft foods! She is still the little stinker with the attitude. Pushing away and being very vocal when you do something she doesnít like or when you cant understand her and she ahs to repeat herself.

I will update more tomorrow. It will be only a matter of days until she reaches the end of this journey. For me it is bitter sweet. I know that sounds horrible but there will be some sort of relief. Relief that Mel will no longer have to deal with the beast. Relief that she will once again be happy. She will get to start a wonderful new journey to a place that we all work so hard to get to. She is so, so lucky to be going there. I only hope that my future brings me the same destination. I will be working very hard to make that trip.

God Bless you all

Melodyís Daddy

Rob

 

THIS IS MELODY'S AUNT SISSY

I ASK THAT YOU LIGHT A CANDLE FOR MELODY TODAY

Karen

 

Update on Mel 2/08 Ė 12:30   

Mel continues to sleep waking up every now and then asking oh, I mean telling ďcheck whatís onĒ. She is still very comfortable and in no pain. Late this morning she was awake enough to have Mommy read her mail to her. She is still not taking any food and the liquid is far and few between.

We are talking to her almost constantly and kissing her always. I think she has gotten more kisses in the past few days form her Mommy and Daddy than she has ever had in her entire life. And let me tell she has gotten a lot of kisses in her life time.

Deb and I have had a few laughs about memories of Mel and even a few from the past few days from her stinkerness. We have also shared many, many tears for those same memories.

We can feel your love and prayers from across the oceans and lands and if you look up to the skies in the night you can see the glow of all the candles lit for her. It means so much to us to have you all with us some physical and some in sprit.

Thank you for all the prayers and please keep those candles burning. I will step out tonight to watch the glow.

God Bless you all

Melodyís Daddy

Rob    

 

Update on Mel 2/08 8:40

I will be kind of short this evening, Mel has a lot of visitors this afternoon and evening and we a somewhat tired.

Curt came over this afternoon and spent some time with Mel, Deb and I. I think I may have forgotten to mention that Debs sister Dawn is here from Norman, OK. She is here with her two beautiful daughters. Thank you Francis, what a wonderful gift you have given our family. Ryan, Jen and Ethan made a trip over this evening. Now Melody just loves Ethan, Jen used to watch the kids during the summer while Deb and I were at work. I heard Jen reminding Mel about how she (Mel) would calm Ethan down in the car when he was cranky. Mel would sing to him, You are my sunshine, my only sunshine. Come on you know that song go ahead sing it its ok. I have sung that song to Mel since she was a baby. I can remember rocking her and singing her that song over and over again until she would settle down and then I would hum it to her. I would hum it kind if loud and more, more quite until I was sure she was asleep. Just yesterday I was sing that song very quite with tears running down my face and my voice cracking. Anyway Ethan managed to get Mel to wake up and even made her giggle a couple of times.

Mike and Cindy are over visiting right now. This is kind of a funny story. Mel introduced us to Mike and Cindy. Thatís sort of how it happened. Mel was out playing with there boys and thatís how we met.

I hope to see some more friends over in the next few days to spend some time with Mel and there farewells. She has touched so many peoples lives in so many ways.

Mel is about the same maybe even a little more awake today than she was yesterday. She wakes sometimes and asks to watch TV and opens her eyes for visitors.

Thatís it for now I will update again tomorrow around the same times as today. Thank you all, Good night and God Bless

Melodyís Daddy

Rob

 

    

THIS IS MELODY'S AUNT SISSY

I ASK THAT YOU LIGHT A CANDLE FOR MELODY TODAY

Karen

 

Update on Mel 2/09 11:00am

Mel was a wake during the night with Deb. I was somewhat awake and heard them talking and thought I would leave them a private moment.

This morning it is a little harder to arouse her and it takes her a Min. to answer your questions. Her breathing is different today than it was yesterday and her eyes do not open as much. I know she can hear me because she gets restless when you talk to her. Her Mommy was kissing her face all over this morning and she was very annoyed and kind of pushed her away. I am telling you she will be that spit fire red head all they to the end. I can only imagine what her fist words will be at the gates of heaven.

My sweet little princess who has had me wrapped around her little finger from the moment I had seen her. Oh how I am going to miss you! Your kindness for others and your attitude, your cuddling and kiss, and how your feelings would be hurt so easily. So many, many things that I will miss left with only memories to cherish until we can be together again. I love you so much, so much that only God knows the love in my heart for you. I promise you this sweetie; I will live my life to its fullest and to be the person that you and Devin have shaped me in to. I will do my best in helping the other children that you so much want to help. You and Devin have been and always will be my life. I love so, so much and the love that I feel will only grow greater in the many, many days ahead.

My pain is three fold, the pain in my heart for Debbie and Devin, as well as my own. Some moments it is so unbearable and others I carry it with my head held hi with the pride in my heart for the family I am so luck to be apart of.

We are expecting more friends over today to fill our house with love and great memories. Thank you all for being here for us, and for sending such great prayers up for us. And I leave you with this. All the words that say God has a plan, she will be in a better place, God only takes the best, things like that. The words come so easily, but the acceptance does not. I have said all these words also hoping that they will make things easier but they do not. Please do not get me wrong I am not angry at anyone, I know how hard it is to find the right thing to say. And please do not stop saying them. In some strange way it is ok. It is ok because they come from your heart and I know the are meant to give us comfort.

God Bless you all

Melodyís Daddy

Rob

 

Update on Mel 2/09 Ė 9:30pm

Sorry for the late up date but we have had company in and out all evening.

Mel woke up not long after the last update and was awake for about an hour. She was watching TV and just kind of hang out. She has been awake on and off most of the day. She had a lot of visitors all day long giving there kiss and the love.

The hospice nurse was here and gave her a check and found that her heart rate is much higher today than yesterday. And her BP is higher of course and this is all to be expected. Itís a part of the process eventually her heart will just get so tired of struggling it will just stop. She has been in ZERO pain and has not need any pain meds expect maybe an occasional vicodin, She is doing well with her swallowing so far but it is getting more difficult for her as time goes on.

There is not much else to tell about today. We are enjoying the company from friends and family as much as possible. We are very tired today so I will cut it short tonight. Please keep the prayers coming and the candles burning. (but be careful ;-) )

God Bless you all and, good night

Melodyís Daddy

Rob

 

THIS IS MELODY'S AUNT SISSY

I ASK THAT YOU LIGHT A CANDLE FOR MELODY TODAY

Karen

 

 

Update on Mel 2/10 9:30am

Well when I keep telling you Mel is resting comfortable I am not lying and I have proof, take a look.

 

I took this picture just moments ago. Notice the kicked back relaxed look, arm resting on the pillow and in a peaceful sleep.

Mel slept pretty good last night and thatís more than I can say for the rest of the house. Most everybody was up and down last night or early this morning anyway.

Before bed last night Auntie Dawn and Aunt Sissy took turns reading books to Mel. Sam I am, Peter Pan, and Little Mermaid to name a few.

I am so great full that Mel is not in any pain. I have talk to many parents and read many stories about having to use Morphine to control the pain that there children have felt. Mel as of yet has not needed any of that. I donít know who is that is Blessing to more Mel or us. Either way it is a great Blessing from God. I hope this wonderful Blessing continues.

Thank you so much for the encouraging and heartfelt messages in the guest book. I try to read them a couple times of day as well as my email. Thank you for allowing us to share such a time in our lives with you. And thank you for getting to know and love my little princess. I hope she has touched your lives as she has ours in such a short period of time. Seven years almost eight is not nearly enough time to love her as much as we want to. I wish you all could have known her before she became sick you would have fallen in love with her just the same.

I will update more later today or if there is any significant change I will sooner. Keep the prayers a coming and the candles a burning. God Bless you all and have a safe and joyous day.

Melodyís Daddy

Rob

 

Update on Mel 2/10 9:30pm

Well today has been a wonderful day. Mel has been awake more than asleep and she has had many, many giggle moments. She has not however eaten but she has drank more today than any other day. What does all this mean? I have no idea! But we are loving every minute of it.

Mel has watched TV and even wanted to watch the movie Grease. She has been very vocal about what about what she wants to watch going as far as yelling to check and see what is on. Mel has had many visitors again today at one point we had one heck of a house full. Earlier in the evening Mel even found it in her self to get in the wheel chair and sit to the table. She even attempted to do a word search but kind of just stared into the pages. But was a good to see her trying.

I donít know what to say except that we are very grateful for every moment that we have with our princess. And no moment is taken for granted.

Mel is back in the recliner very worn out from her day today and I am sure she will sleep very well tonight it took everything she had in her to do the things she has done today. But the laughs and giggles were great. We couldnít have asked for a better day.

Melodyís Daddy

Rob   

 

Update on Mel 2/11

Ok you are all right no news is good news. Mel has been awake a good part of the day and we have been spending just about every possible minute with her.

When she woke up this morning she had to go poop, ok now thatís a pretty big deal around here since she hadnít pooped for almost a week. Do not tell here I told you about her pooping. That is such a fun word to type poop, poop, poop, poop, hehehe.

She managed to sit at the table for a bit this morning and again in the afternoon. It takes a lot out of her to get from the recliner to the table and back again. She sleeps for awhile each time she makes the move.

Mel managed to get a few giggles out today, not as many as yesterday but we will take them none the less. She has also had a few more visitors today. Some just stopping by for a visit, some reading her books.

It has been a pretty good day overall but at this point everyday is a blessing and we treat each one just that way. Sorry for the late update, we were having connection problems (self inflected) and I am sharing the PC with three kids and even more adults. And well I was just feeling lazy today.

Deb is doing well, better than expected I guess maybe itís the shock factor that has kicked in. Devin is angry with us because he thinks that we have given up on Mel getting better. Of course we have not, we ask for that miracle every day several times a day.

Well good night and God Bless you. Spend this weekend with you family and give them lots of hugs and kisses. Please continue the prayers for Melody and our family and remember all our caringbridge friends as well.

Melodyís Daddy

Rob

 

Update on Mel 2/12

This freaking SOB of a tumor is taking its sweet time destroying my daughter.

Mel has been sleeping all day again today. When you do get her attention its like she is not there but that have something to do with 101.5 fever. Here eyes are just about uncontrollable and she still hasnít eating a thing. Although tonight she is eating a Popsicle and drinking a lot of water trying to get hydrated again.

Not much to tell you her day because it was not much of a day. Debs Aunt Debbie came into town late last night so we have a full house. Even Aunt Sissy and the girls are here tonight for a visit. Itís a pretty busy house tonight and we are working very hard to get Melís temp down. She is giggling and laughing a bit tonight and that has got to somewhat good.

At one point today Melís BP was 165/115 and her pulse was 147. Right before hospice left it was down to 132/72 but her pulse was 151. Arggggg! I got a feeling its going to be a long night for her Stinkerness! But Mommy and Daddy will be right beside her.

Please, please keep the prayers coming! And thank you for all that you have done for us.

God Bless you all

Melodyís Daddy

Rob

 

Update on Mel 2/13

Mel has been sleeping most of the day however, a few times when she was awake she was giggling at the TV or something someone said. A couple of times she was just giggling for no apparent reason. I think maybe she was still sleeping and was giggling at something else. It is harder to wake her today and when she is a wake it for very short periods of times. Her fever is up and down and if we do not keep an eye on it gets up there. Mel is able to swallow small pills so she is taking Motrin to control the fever along with cool rags and just a sheet to cover her. She is also drinking a lot of water today pretty much on her own. As long as we put the cup in her hand she knows she needs to drink it.

Even when Melís eyes are open its like she is not there. There are times when you can see her there, and thatís when we tell her ďMEL? I LOVE YOU!Ē and sometimes we get an ďI love you to!Ē  Of course thatís not all we say we talk to her all the time when she is visibly awake we talk to her normally but those times are few and far between. And we do talk to her when she is ďasleepĒ and if you ask her ďyesĒ or ďnoĒ questions she will shake her head, sometimes you need to ask her several times to get to her.

Her breathing is becoming more labored so with the we have introduce the Morphine, I wanted to hold of as long as we could with that it signifies the end for me But I know it does what needs to be done. We have also been using it for the headaches that seem to come a little more often.

I am very nervous today and I hate it. I guess just waiting for the hammer drop every time it is difficult to wake her up a feel sick to my stomach. Kind of like that butterfly feeling you get when something is wrong. I hate that as well. I just want it all to go away.

Auntie Dawn took all the kids down to Sea World today and they had a great time. Aunt Sissy and Uncle Browine made dinner and it was great. All I have to say is ďBeef! Itís whatís for dinner!Ē Thanks you guys it was Mmmmm Good!

Well good night and thank you all, we are truly blessed to have in our lives.

Melodyís Daddy

Rob

Update on Mel 2/14

WOW! Itís almost tomorrow here my sleeping is all screwed up. Up early and to bed late, ummm no early. What ever!

Letís see Mel was awake for awhile this morning watching cartoons and giggling. Ok so I have been saying giggling but it is more like a chuckle and when she does it her whole body moves. Itís kind of cute, in a chuckling kind of way.  

Well Melís BP was good today, I do not have it right here but it was good, well I should say better than it has been. She had a few awake times today but she is having trouble separating the ďDream worldĒ she is in and the ďAwake worldĒ she is in. She gets a kick out if sometimes and when we tell her the things that she has been saying she gives us that chuckle. She does still enjoy the TV and asked to see what is on. Earlier this evening there was music on the TV and we thought Mel was ďSleepingĒ but when the music stopped she said ďWhat happened?Ē we of course said ďWhat happened to what?Ē She said ďThe musicĒ and we told her that it was on TV and it was over now. ďOH!Ē thatís what she said to that and then gave that chuckle.

Mel did manage to get down a Jell-O cup tonight, which is the closest that to sold food she has had in over a week. Her drinking is doing much better, but that confused thing that she has is getting worse. To be expected I guess but it still sucks something awful.

Not much more to Tell except thank you for all the prayers for Mel, our family and of course all our beautiful little friends. I wish there was more to tell you but better than a week things have pretty much been a ďFOG!Ē

Good night and God Bless each of you!

Melodyís Daddy

Rob       

 

Update on Mel 2/15

I never in my life thought that I would see the day that I would be awaiting the death of my daughter, yet here I am. Wishing that it would come and let her out of the misery that she faces everyday! I sometimes still beg God to spare her and leave her here with us to live out a beautiful, wonderful life. In some strange way I am ok with her leaving, knowing where she is going. There is no doubt in my mind that she will be going to Heaven! I am ok with that.

Mel is hanging in there losing a little bit if herself everyday. But still finds time to laugh with, I mean at, ok with us a few times during the day.

Lisa said we need to tell you what to pray for so here it goes. Please pray for all this to go swiftly and painlessly for our Princess. Thank you and God Bless you!

Melodyís Daddy

Rob

 

What a great picture! Thank you Kaya!

 

Update on Mel 2/16

Ok the big question of the day and every other day is, "How are you doing?" How are we supposed to be doing? I do not know! There are no directions on how to do with all this. You may catch us in a good moment or you may not. Just do not ask anymore because we do not know how to answer and, you probably do not want to really know anyway. I mean you do not want to feel it and that is the only way for you to know. Please do not ask that stupid question anymore, we are sick of hearing it.

Mel has been in a ďdream stateĒ most of the day even when you think she is awake she throws a zinger in on you. I think for almost the entire day she was chuckling weather some what a wake or asleep. Dreaming, dreaming, dreaming and as far as we can tell they are all good dreams. One of the times I asked her what she was dreaming about she you and Mommy. Now isnít that great! She even offered her Uncle Bill some cookies today, cookies that we donít even have. She asked mommy if she and Keith (Leslieís grandson) could have some more fruit roll ups. Keith hasnít been here in quite a few weeks. Ahhh, to dream like that would be a Blessing (I have only had nightmares lately.)

No matter what we are doing no matter who we are talking to or what the conversion is the only thing on our minds is Mel. You could be talking to me about anything but my mind is thinking about Mel. Itís a strange thing, I know what you are talking about and I will give you response to what ever it is but, Mel that is who and what I am thinking about. Crazy eh!

Mel BP is high and her pulse is even higher (161). She is breathing with her entire body. But she is comfortable and free of pain except for the occasional slight headache. She has kept smiles on our faces fro some of the day with all her chuckling and talking in her sleep. She did eat some Jell-O today but not much water. We are just waiting, some one said to night ďAhhh the worst part.Ē My reply was ďNo, the worst is yet to come!Ē

Please continue to pray for a swift and painless journey for our Melody and for many more of the silly dreams for her. Also please remember all our caringbridge friends and the parents who are already living with there Princes and Princess tonight.

God Bless you,

Melodyís Daddy

Rob

 

P.S. Sorry for the late update.      

 

Update on Mel 2/17

Mel was awake and very aware this morning; she even woke up her Mommy by calling her and asking for a coke. She was awake for a while and then right back to her dreaminess. At was great she was speaking clearly and was being her silly little self. Her drinking has been good today and she did manage to eat another Jell-O today. At one point today she was in her ďdream stateĒ and she thought she was at the movies she even asked Mommy to get her some popcorn. I do not think Mel knows she it at home, even with all that is going on around her she has told me that she is at the hospital. It is heartbreaking at times but comforting at other times.

We had a computer issue this morning and I have lost all my email address and emails. I had to redo the entire computer. The emails were probably the most important thing and I can get your address when you email me again or out of the guest book. So if you emailed me yesterday and are expecting a reply itís not going to happen. So if it was important send it off again.  I sure do hate when that happens. O well we donít put anything that canít be lost on this darn thing anyway. Ok you have to check out Juliannaís site. I remember a message her dad put in Melís Guest book. He said if there is anything he could do just let him know. You do it every time I visit that wonderful little cuties web page you make me smile and laugh and that is worth more than words can say. If you do not have time to visit you have to check out this guy. Turn up your sound and get ready to laugh youíre a** off.     

Mel is still comfortable and for the most part pain free except that occasional headache. She is still kind of giggly and in a good mood for the most parts however very restless tonight and we gave her some Meds for that and is more restful right now.

Thank you for all the prayers for Melody, our family and all our caringbridge friends and families.

Good night and God Bless

Melodyís Daddy

Rob

 

 

Update on Mel 2/18  

It pretty quite around here tonight, Debís Auntie went home this morning and her sister and nieces leave tomorrow so they went down to San Diego with Grammy that way they donít have to get up so early. And Devin is at a friendís house for a sleep over. Please pray for everyone to get home safe.

Last night after we gave Mel the Meds to settle her down she went into a very deep sleep and her breathing became very much labored. It was very hard, almost impossible to get her to acknowledge us. To say the least it was a very long night, Deb and I didnít get to sleep until 3:15 thatís when Melís breathing settled down. Even then it was hard to get to sleep.

Melís day today was very restful. She did drink some today but not much to speak of. No Jell-O today thought and we offered it many times. She did give a few giggles but not nearly as much today as yesterday. While changing her sheets today we found some skin breakdown on her buttocks and that is not something you like to see let alone deal with.

Ok so Mel has been in a hospital style bed for about 5 days now which makes it difficult to wash her hair especially since she can not hold her head up and it has been about a week since she has had her hair washed other than the no rinse soap. Well to say the least it is very knotty and tonight we have noticed that most of her hair has been falling out from the chemo. It has been a couple of weeks since she has had any chemo and this was a possible side effects of it, but what a shock! Most of her beautiful red hair is gone!

My stomach is full of butterflies tonight because of all that has gone on the 24 plus hours and I am sure I will not sleep much again tonight as well as Deb. This rollercoaster ride really sucks bad. I hate the fact that she has to go through all this. When is this nightmare going to end?

Please continue to pray for our princess and our family and for all our caringbridge friends. God Bless you and you families.

Melodyís Daddy

Rob

       

 

Update on Mel 2/19

Mel has been sleeping almost all day but she will answer our yes and no questions. She drank a moderate amount of water and had a little bit of soft serve vanilla ice cream this evening. Tonight she is very giggle in her dreams but still manages to answer our questions. Hospice came by to day and Melís BP was 111 over72 and her pulse was 148 both, the best they have been in a while. I tried to check her pulse tonight but I was unable to keep the count itís like it has a double beat. What I was able to count I would have to guess it in the 160 or better range.

Thatís about it for today it rained most of the day and just a short trip up the road (In Temecula) there was a tornado that touched down and did some minor damage. Can you believe that a tornado in Southern California. What did that Auntie Dawn leave us with? (She is from Norman, Oklahoma Ė Tornado ally) It has been raining here for about 2 days and is supposed to continue on and off until Wednesday night. Noah how is that ark coming along? You better HURRY; we are going to float away.

Bruce, our 10 month old 80lb German Shepard has been having some problems with is walking and eating lately. Now I was starting to get worried after about a week of this. Mrs. Friend called her Veterinarian and explained our situation to him and he said that would take a look at Bruce. He came to the conclusion that Bruce has Long Bone Disease. It is kind of like growing pains and he will grow out of it by the time he is three. So with that, thank you to Acacia Animal Hospital and Dr. Ballinger. You guys were great and we really appreciate it very much. And those of you looking for a Veterinarian in the Hemet area they are wonderful here is there address and phone number 1110 N. Buena Vista in Hemet 951-658-3219.

Thank you to everyone! For your prayers, good wishes, guest book entries, emails, well just everything. You are all wonderful thank you very much!

Good Night and God Bless you all

Melodyís Daddy

Rob

 

2/20 9:02am - Please visit Sarah, she in in the place as Mel. Just click on her name to visit. Please leave them a message in there guest book.

 

Update on Mel 2/20

Melís day was much like yesterday but with more sleeping time. She is dreaming more and shaking her head yes and no as if someone is talking to her and asking her questions, only she asleep. Her drinking has been less than yesterday and no Jell-O today.

Hospice just left and Melís BP is 158 over85 and her pulse is 153. The nurse said she heard some fluid in Melís lungs today and that her breathing is shallow, something that I noticed this morning.

What can I say except that we are on the edge at just about every moment and sleep is veryÖ well they are short sleeps. I am not sure what else to tell you there is much to tell right now. WaitingÖ waiting for our sweet princess to die and pass on to the next life. How lucky is she that it is unconditional that she gets to go to heaven. We as adults must work for it, we need to ask for forgiveness and accept the Lord. Where as our children are pure, and there is no doubt that they will be spending eternity with God our Father.

So we wait asking, praying, begging God for this to be quick and painless. All the while our hearts breaking and aching like never before in our lives. I can not fathom why this is happening, for what reason could it be that she has been chosen? Or why this is part of the plan? In time I know we will find out and only then will we understand and agree that it was the right thing and be ok with it. Until then we will always wonder and try to accept it as best we can. As hard as it will be!

Thank you, for everything. Good night and God Bless Bless you.

Melodyís Daddy

Rob

 

Hello everyone this is Melody's Aunt Sissy,

I am hosting a fundraiser for Melody. I hope you can visit the EVENTS page to help us with it. For $25 we will send you your choice of fragrance that will burn for 60 hours and fill your home or office with a subtle scent that you choose. You not only get a great candle, but you will be helping Rob and Debs Princess Melody too! The candle will be delivered to any address you say. You can buy one for you or a friend. Thank you for helping Melodyís Aunt Sissy with another fundraiser.

 

2/21 9:30 am

This is the Message on Sarah's page this morning. Please pray for peace to overcome her family.

 

It is with great sadness that I tell you Sarah passed away this morning at 2:50 a.m. She was sleeping when she took her last breath. It seemed peaceful and painless. We will miss her so much and always love her.

Love, Jennifer

 

Update on Mel 2/21

Mel is less responsive today and her drinking is down to a few sips during the day. How ever her dreaming continues and she is answering what ever questions the angles are asking her. She answers them as well as us with a nod of the head. Not much else to tell, the nights are long and full of dreams and not the kind I want to have. Deb seems to rest and is awake sometimes while I am asleep. Mel has told us ďI love you tooĒ when we tell her ďI love youĒ Itís good to hear.

Good night, God Bless and thank you for everything.

Melodyís Daddy

Rob 

 

Update on Mel 2/22

Mel has been a little more responsive today. Sleeping is the only thing on her agenda today not much of anything else. Opening her eyes when you touch her, but she is much less vocal than the past few days. She will still nod her head when you ask her questions but we have to ask her a couple of times in order to get her to answer. He BP is about the same as previous days but her pulse is up to 180. Her little heart is struggling!

Last night was ok we both slept pretty well and this morning when I woke up I saw that Mel was already awake. With her eyes and moving around her right arm I said (kind of loud) ďWhat are you doing awake already?Ē and she started to cry a little. I asked her what was wrong and she said loud and clear ďYOU SCARED ME!Ē OOPS my bad. I rubbed her hands and face and told her ďI am sorry, I love you.Ē And I got one back ďI love you to.Ē She said, ahhh how I love that.

I found this in one of Debs magazines and like it. I thought I would share it with you.

Itís not yesterdayís regrets,

nor tomorrowís challenges that matter-

only the infinite possibility of today.

Linda Knight

Just something that caught my eye that I wanted to share. Good night, God Bless you all.

Melodyís Daddy

Rob

 

Update on Mel 2/23

Eleven months ago today! Thatís how long itís been eleven months. I didnít realize that until just a moment ago.

What is there to say? I am at a loss for words. We may not even get our year to 18 months we were told we MIGHT get. It still doesnít seem fair! Not a day that goes by that I donít feel that way. Sometimes I feel cheated, other days I feel luck to not be a parent that sends there child off to school only to find out there baby was hit by a car and is gone for ever. Some days I wish it was all over already and we are able to move on with our lives, other days I am thankful that we have this time to take care of her and enjoy the little moments that we have. Rollercoasterís I donít like this one, not even a little bit.

Mel has been doing her sleeping thing again today. Everyday is about the same right now. Sleeping and some reactions to our words and to our touches. She does have a couple of sores under her skin folds that we are concerned about but we along with hospice are trying to get rid of. Today her feet feel cold even with a blanket on them and that is not good. It could very well mean that her body is starting to take care of the important organs a sign of failure. Her BP was 142 over 100 and pulse was 142 better than yesterday but still not a good thing. She is still taking her pills if there are mixed in Jell-O, they just slide down that way and she is able to swallow them that way. She is not drinking much at all and has no interest in it unless we really bug her about it.

Thatís it! Thatís how a tumor kills a child, slowly and patiently! It has no sense of time or pain it does what it wants to unobstructed with nothing to fight it back.

Please keep Emerald in your prayers tonight. She had been having some problems recently and her MRI showed the worst possible thing that could happen. The tumor is growing back and it is moving into her brainstem. The only hope is chemo! Please pray that it works for her please pray for her miracle.

Thank you for all the prayers, and guest book entries. They mean more than you can imagine. Good night and God bless.

Melodyís Daddy

Rob

 

Update on Mel 2/24

Mel is very unresponsive tonight and she had a fever of 101 earlier tonight. Her color is not good today and her skin is changing. It is much drier and flakey. She hasnít drank anything at all today but her body is getting rid of fluid. She has vomited several times today but mostly it is dry heaves.

Deb said earlier tonight that this is bad, I disagreed with her and said ďNo, This is good!Ē How can it not be good? No more suffering! No more sickness! No more tumor! We keep telling her ďItís ok to go. Donít be afraid or scared. We will be ok and you will have so much fun! You wonít be sick anymore, you can run and play and be a kid again!Ē I hope she is listening and will go when it is time and not fight it anymore.

I hope she knows that we will all be ok and will be looking for her to leave us little signs that she is ok. And that we will be there sooner then she knows it. I hope she is not scared or afraid. Help us send the angles to her, ask them to come and get her and show it is going to be ok. Please God, I am begging you to take her! Do not let her suffer any longer!

We will be alright! Someday things will be ďNormalĒ. Yes our lives will change in an unbelievable way but we will get through it. How ever long it takes I now she will be right beside us every step of the way. I still canít believe this is happening to Mel or to us.

Please donít forget all our caring bridge friends. There are some kids and families out there tonight that really need your prayers tonight just as much as we do. I went by most of them today but, I didnít leave a message for any but I want you all to know that you are in my prayers tonight and every night. You have not been forgotten here and you never will be. In time I will be able to find the words to leave you with but, right now I canít seem to find them. Just know that I do make the time to check on you all.

Thank you so much and God Bless you.

Melodyís Daddy

Rob

 

Update on Mel 2/25

It was a very long and trying night! Deb and I were up all night and didnít get any rest until after 8am this morning. Mel was having trouble catching her breath. She had a mucous build up in her chest and throat. At 4:30 this morning we decided to call for some help and got a hold of hospice. Right after we made that call we checked Melís Temp and it was 102.7 Arrgggg! So, in with the meds and on with the cool rags to get a grip on it. After 3 hours of cool rags it started to come down.

The fever is from her body doing what it knows how to do, fight. It is working so hard that it heats up to combat things. And the mucous is just normal just like you and I get except she can not process it as we do. To put the icing on the cake the nurse could not get a BP and her pulse was in the 140ís. So that pretty much brings us to right now, other than fighting off the fever all day we (our entire family) have been spending a lot of time with her stinkerness. The nurse said at this point it is up to Mel and God! Her body is finished it is exhausted and she pretty much struggles to breath. She is breathing with her entire body and even pausing (not breathing) every once in a while.

Deb and I did get a few hours of sleep after the nurse left. While I was sleeping I could hear every breath Mel was taking. It was strange I was asleep but I could hear her struggling almost like she was drowning. I kept telling her not this way, it canít happen this way. She finally had a couple of good coughs and was able to settle down a bit.

So, we wait! Wait for her to choose to go. I wonder why she is waiting. What is it she waiting for? What else can we tell her for it to be ok? Donít answer those I was just thinking out loud.

God Bless you all.

Melodyís Daddy

Rob    

 

Update on Mel 2/26

Melís condition is the same; there is no change except that we have been battling off the fevers all day. Deb and I slept in shifts last night keeping a very close watch on our princess. She has managed a few nods of her head today when we asked her if she is comfortable or if she is alright.  The nods are ever so noticeable but they are there. Deb and I even got a couple of return kisses today. Most of the time she does not respond to us the only reaction that is for sure is when we cover her with cool rags. She has even reached out to remove the one on her torso.

We have been keeping a secret for sometime now. There was a dedication for Cheyenne tonight at ASU. Visit Cheyenneís site to read what a party it was. I have been checking her site all day to get the details. I wish we could have been there. That young lady has touched so many lives, I only hope that my little princess has touched half that many. I have gained so much from Roy and his family over the past eleven months or so and they deserve every bit of tonight and more. Melody received a beautiful butterfly blanket from the ASU Rambles womenís basketball team and many others in honor of Cheyenne. As well as many other children who received gifts. Thank you all for the gift it is never far from Mel. Please go by and read about Fiveashís wonderful Day and leave them a message in there guest book.

I will leave you all with some Facts about Brian Tumors that I found on Rachelís site and there will be a link to the site they are on.

Thank you and God Bless you all

Melodyís Daddy

Rob

 

Spencerís Treasures

 

In the United States, the number of brain tumor cases are increasing.

Each year over 185,000 people in the United States and 10,000 people in Canada will be diagnosed with a primary or metastatic brain tumor.

Brain tumors are now the leading cause of cancer death in children under age 20 now surpassing acute lymphoblatic leukemia (ALL), and are third leading cause of cancer death for young adults ages 20-39. (1)

Last year 10,000 pediatric brain tumors were diagnosed, 200 of which were intrinsic brainstem gliomas with close to 0% chance of survival. 95% of those with intrinsic brainstem tumors die within the first year of diagnosis.

At Children's Hospital of Orange County, about one new tumor is diagnosed each week and many of those are inoperable.

There are over 120 different types of brain tumors, making effective treatment very complicated.

Because brain tumors are located at the control center for thought, emotion and movement, their effects on an individual's physical and cognitive abilities can be devastating.

At present, brain tumors are treated by surgery, radiation therapy and chemotherapy, used either individually or in combination.

Brain tumors in children are different from those in adults and are often treated differently. In addition, due to the effects of the tumor or the treatment required to control it, survivors of childhood brain tumors often have physical, neurologic and physchological disabilities.

Enhancing the quality of life of people with brain tumors requires access to quality specialty care, clinical trials, follow-up and rehabilitative services.

Improving the outlook for adults and children with brain tumors requires research into the causes and better treatments of brain tumors.

Resources: Pediatric Brain Tumor Foundation of the United States
CHOC Neurosurgeon: Dr. Michael Muhonen
(1) SEER Pediatric Monograph, 1975-94, Table XXVII-7

 

Update on Mel 2/27

Just a short update tonight, I am starting to get tired and I have the second shift with Mel tonight.

There is absolutely no change in Mel today. We were fighting the fever all night again last night and it finally broke about 6am. It has been down for the entire day. She did open her left eye today every so slightly and gave us that little nod of hers a few times. Deb and I were able to steal some kiss from her today, and she even gave me little grunt of annoyance today when I nibbled her little hand. As for water, little if none maybe a few tablespoons full with some crushed up Meds.

Please remember all our friends tonight in your prayers, Emerald and Rayanne just to name a couple that are in need of prayers. Rayanneís news is not good, please go visit and leave them a message. I know I fail to mention all the kids and all our caringbridge friends that are in need of prayers so please go and visit them when you have time.

Thank you for all that you do for us. Good night.

God Bless you all

Melodyís Daddy

Rob

 

Update on Mel 2/28

I am sorry but I donít have much to tell you tonight. There is no change in Mel today. We got her to open her eyes a couple of times to day and she squeezed my hand. She seems to be comfortable and in no pain. I canít imagine what is going through her mind. Imagine if you can that your mind still worked just fine but you could no get your body to what you want it to. Imagine the frustration. I am sure thatís what happening with Mel right now. It that comma state that you hear so much about. She is fighting this with all her might and no matter how many times we tell her it is ok to go, she still manages to hang on. I wish there was more I could do for her! I wish I could hold her and rock her in the chair. I have been singing her the songs that we have always sang to her since she was a baby, of course while nobody is around because I canít sing a lick. I keep telling her that we are at home with of puppies and kittens she was confused right before she went to into her comma state and thought we were at the hospital. So I keep reassuring her that we are at home and we will never take her back to the hospital.

Not much else to tell you. The days are long and the nights are even longer. Thank you to all my co workers and friends at M&O for the fundraiser you had to day. I gives us one less thing to worry about. And thank you everyone that has helped us financially through all of this.

Good night and God Bless you all

Melodyís Daddy

Rob

 

Update on Mel 3/01

Well if you havenít already looked at the guest book and seen what Devin wrote go look. I t has been a rough couple of days for Devin and they seem to be getting worse. He still thinks that we gave up to early and that there is still a chance that she will live. He screamed and yelled at his mom and me tonight until he could scream no more. I it heart wrenching and there is nothing we can do for him except tell him how much we love him.

Melís BP is starting to drop a little bit each day and her pulse is going up. The hospice nurse said she is a fighter. She has not done anything today. No eyes opening, no kisses, no hand squeezes. Not else to tell. Mel is getting so, so money kisses.

Ok so maybe you have all seen me write about Mathewís Miles. Last year they rose over $25,000 for brain tumor research. I set a goal to double that number this year. So here is what I am asking. Last month there were 15,117 ďunique visitorsĒ that visited Melís site 71,788 times thatís an average of about 5 visits per person. So check it our if all 15,117 of you sent $2.00, I can reach that goal and then some, $2.00 a stamp and the cost of an envelope, thatís what it would cost you to help me raise that money. So there is my goal for this year $30,234, impossible? I do not think so. With your help and my big mouth to get the word out we can do it together. If you like to help me with this you can send you $2.00 or more if you like to the address on the Special page in the Dollar map area with a note saying what it is for. Or if you like you can visit Matthewís Miles and send it directly to them with a note on it. Please help me to raise this. I believe the walk will be in September this year in New Jersey I will be there I promise you that much as for the money thatís up to you. Help me find a cure for this monster! I told Mel that is what I would do thatís what my job will be, to do my part helping to find a cure so that no child and there family will have to ever go through this.

Thank you for all that you have done for us. Good night and God Bless you.

Melodyís Daddy

Rob

 

Update on Mel 3/02    

Thank you for all the guest book entries for Devin. He is doing a bit better today. I just wish there were more I could do for Deb and Devin. I know as do you there is nothing. Each of us will deal with this in our own way, some days together, some days alone. But I hope more together than alone.

When the hospice nurse was here today she heard more fluid in Melís lungs, her BP was 102 over 62 and her pulse is about the same in the 160ís. It is starting to drop not a go thing depending on how you look at it. She said it be hours maybe a day but more than likely not much longer than that. As much as I will miss my princess I can not wait for it to be over for her. I know that may sound horrible to some of you butÖ thatís how a feel. It feels rotten to say it and even worse to feel it.

Mel hasnít changed a bit from yesterday. She is still in that ďcoma stateĒ and only opens her eyes when we roll her over to give meds or change her sheets when she pees once a day or so. Tonight when her mommy was lying next to her she day make a few cooing noises kind of like a baby would make.

Donít forget the $2.00 challenge that I wrote about yesterday. Tell all your friends and family. Would it be great if together we could double what Matthewís Miles raised last year? I am really excited about this I hope it happens. I made Mel a promise and I will see that it happens. I pride myself as being a man of my word and if I every learned anything from my dad it is that. The address you can mail to is on the Specialís page under the Dollar map section.

Thank you for al the prayers for Melody and our family. Thank you for all your support that you have given us and continue to give. If your words ever seem insignificant to you just remember this. Several times a day Deb and I check for new messages. We look forward to reading them. And speaking for the entire caringbridge community and beyond, they are one of the things that get us through this time in our lives. I know that for a fact you just ask any one of them. With that said, take a moment of two and visit our friends and leave them a message. There are some new friends that have left there web address in the guest book and I havenít had a chance to add links for them so, as you are browsing through the guest book click on a link or copy and paste it to your browser.

Good night, Thank you again, and God Bless

Melodyís Daddy

Rob

 

 

Update on Mel 3/03

We are in the process of fighting back a high fever tonight. Melís BP today is 82 over 60 in pulse is in the 180ís. Deb is a mess today and Devin is not doing well either. Deb has been lying in the bed with Mel most of the day. I am just getting by some minutes or ok others are not. We have my parents here with us, and Debís mom and sister as well. We are now and will when it is over get thorough this.

I am sorry for the short update but I feel like I ran a marathon today and am exhausted. Please remember the $2.00 challenge. Please tell all your friends and family and help me to reach that goal.

Thank you for all you guest book entries, prayers and good wishes. Good night and God Bless you all

Melodyís Daddy

Rob

 

 

Update on Mel 3/08

Dear Earthly Angels

This is Melodyís grandfather Poppa Bob. I would like to thank each and ever one for all of your Loving support, good wishes, and prayers, and donations that were received from the thousands of earthly angels around the world during Melís illness. I can assure you that Melody was a very happy little girl opening the packages and cards that were sent to her. And thank you again for remembering Devin, her big brother too. Melís mom read every one of the cards to her and they sure put a very big smile on both of their faces.

Who knew it was possible with all of the problems people are faced with in this world, that total strangers would reached out with caring and loving support that has touched the Hearts and Souls of our special family. More importantly our little angel named Melody.

I would like to take this time to personally thank all of the earthly angels (you all know who you are) out there who helped not only make Melody smile but also our family this past year. Words could not express how grateful that I am to have had the pleasure of meeting some of you fabulous folks through Melodyís illness buy way of the cards, and gifts, and through the great web site that her Web Master, Stan Simmons, has provided for us which allowed us the opportunity of sharing Melodyís story with you, he is truly one of those special earth angels I will always hold dear to my heart. Thank you Stan and Family.

I Love Melody very much, you see, she was my snuggle bug. She will forever be in my heart.

God Bless EVERYONE

Melís Poppa Bob

 

 

Update on 3/10

Sorry it has taken us so long to write an update. Thank you for being so patience. Rob, Deb and Devin are doing ok. Rob has a dear friend, from High school, visiting, Wayne. He and his mother, Pauline, came in Friday after Mel passed and spoiled them all with food, conversation and fond memories. It was wonderful. Debs Mom and Sister, Dawn are still here supporting Deb. Bammom and Poppa have been a fantastic support too. Bammom basically moved in for the last year to help out around the house and with Devin and cooking. Poppa has been here for the last 2 months too. They finally made it home for a few days to tend to their affairs before services. Everyone is together and yet they have separate morning processes. It puts a smile on my face to see Rob and Deb come together and hold each other tight and without words care for each other. Devin is home this week and adjusting as well as any 10 year old could. I will allow Rob and Deb give you an update on him when they can. And donít worryÖthey will. Rob said when he can he will be back to his updates. Check in from time to time and check up on them.

Services have been finalized.

Our Lady if the Valley Catholic Church

780 South State Street,

Hemet, CA 92543

1:00 pm
Please do not wear black

Map on Mapquest.com

 

Reception:

Harmony Elementary School

1500 South Cawston Ave

Hemet CA 92545

Until 4pm

In lieu of flowers please consider a donation, in Melodyís name, to www.makeachildsmile.org

We hope you can join us in a celebration of Melody. It should be a day to reflect on how precious she was to us all. PLEASE DO NOT WEAR BLACK!!!! Rob and Deb want you to wear bright cheerful colors, preferably pink, and purple (as they were Melís favorite colors) and white. Harmony Elementary School has graciously offered the use of the Multi Purpose room for the reception. We will display some of the grand things Melody received from people all around the world. (Cards, stuffed animals, drawings, gifts, well wishes and more.) The staff of Harmony has supported Melodyís family with meals every Tuesday and Thursday with has been a fantastic help. A few teachers even held carwashes and supported the Comedy Show. And now they will host the reception for us. THANK YOU ALL! You are angels for what you give our children and that is only confirmed in how you rally to our aid. I hope you get back 10 fold for the generosity you have displayed this last year.

Robs work! What can I say? Actually I will not say much because I know he will want to elaborate on that himself. But from a Sister who loves her brother, I could not have asked for better working conditions for him. Rob was directed by God to have this job. I know of no other place that would allow the amount of time down and still help with living expenses. The fundraising was incredible. Melody wanted for NOTHING. You are all mostly responsible for that. I hope to meet some of the people on Saturday so I can put faces to names. I have met a few and the kindness you show our family is incredible.

I am not sure when Rob will resume his updates. I will share anything they want me to with you. I do not want to write anything that Rob and Deb are not ready to give out therefore I am sure you can understand. I know how I hurt for Melís loss and I can not imagine their pain. I just realized that tonight will be one horrible week without her with us. One week ago Princess Mel became Princess ANGEL Mel, deservingly so. She truly earned her wings with grace and the strength of a contender. Who of us could be half as strong as she?

Please remember Ray Annís family. They too have gained an angel. Sadly they too have empty arms and a hurting heart. There are still so many families fighting for their childís life. It weighs heavy on our minds. And please remember Robs request for Matthews mile money. He has received close to $400 towards that and he smiles each time he tells me where he is at. Thank you.

Peace be with each of you through your day

Karen

Melís Aunt Sissy

 

 

Update on 3/11

Well, Iím not really sure where to start. Itís been a long week and there is emptiness in us that can never be filled. I canít even explain the feeling; itís something that only a handful of people will ever feel and something that we will never wish on anyone. Right now, it still seems unreal.  I think we are still shocked.  Although Melody was diagnosed almost a year ago, itís still shocking.  Her death has left us with a shocked, empty feeling.  What happened to Melody is not right. It will never be.  I know itís wrong to think this but, God owes us an explanation.  I know it will be the first thing I ask about when I get to Heaven.

First, we want to thank our families for everything that you have done for us. I donít think that we would have been able to do everything that you have done. From all the support you have given us, to setting up the services. We will never be able to repay you and words seem so inadequate. All we can say is thank you from the bottom of our hearts.

To our friends old and new alike, you have been there from the start and never left our sides. We are truly blessed to have you in our lives. We say the same thing to you words alone can not express how thankful we are to you. You kept us company in the wee hours of the morning, brought and bought us dinner and just were there so we could have someone near us.

To everyone that has support us financially, you are incredible. Without you, we could not have spent the time with Mel that we so desperately needed to. And to those of you that sent Mel mail, well, you to blow our minds. The out pouring of love to a little girl that is oceans away from some of you touched us and made Mel one of the happiest little girls on the face of this planet. Thank you so, so much! Because of you and of course Mel, we will now be one of the biggest contributors to sites such as MACS, Audreyís Umbrella, and Tumbleweed. (Just to name a few).

As for the last few hours with Mel, it wasÖwell it was horrible in some ways but peaceful in others. She was in no pain and was surrounded by our family. We new it was time by the way her breathing changed. Her breathing was bad for about 30 or 40 Min. until she took her last breath all the while everyone urging her to go and telling her that we would all be alright. As hard as those words were to say, they came from our heart and we knew that would be best for her. Just a few minutes after her passing we all had a little giggle when I said she was probably already shopping.  Melodyís last words to Deb and I (at separate times) were ďI love you too.Ē

The days are hard, even through all the laughter and distractions. There are many, many tears shed. Some tears are shed with others, as well as the giggles, when we discuss all of Melís adventures and silliness. Most of my tears are done in privacy and of course Deb and I have shared many. I know we will have many more tears in private and together and there are going to be some very difficult days that lay ahead. After all the distractions leave and life moves on we will share those moments together as a family and Mel will be right by our sides.

We know that Mel is dancing and signing in heaven with many other children. She is riding her bike, running around in her bikini and doing so many other things that she enjoyed in her life that she was unable to do for the last year or so. We know Mel is with us we can feel her presence and she is passing on the giggles to our family and friends. Deb and I both had dreams of her last night and we shared them with one another. We hope and pray for many, many more dreams and some signs from Mel that she is ok and doing fine. 

There is no way to explain the emptiness that we have in our hearts. Mel and Devin are our life! Over the past year or so our lives were Mel every minute of everyday was all about Mel and now the physical part is gone. We lived for taking care of her. We lived for her, thatís what we did and now we try and find things to keep us busy things to distract us. The void and the physical pain that we feel, feels like it will never go away but I am sure that in time it will be different. But for now we try and find things to fill it and make the pain go away.

We are planning on taking a trip to visit a few new friends and old ones as well. We will be heading east for the most part. Hopefully to share some tears and laughs with other families that have experienced or are experiencing the same pains and sorrows that we have and are. We would like to stop and see as many people as possible in a two or three week period. I am not sure when we are leaving yet, but I feel we need to get lost in the world for a time.

As for raising funds for brain tumor research, I just want to tell all of you that have sent your donation thank you. And to those that are curious, 100% of the money that you send will go towards brain tumor research. All expenses for tickets, lodging and meals for us to go to New Jersey will come out of our pockets. Not one dime of the money sent will be spent for personal use or expenses. So with that said, I am begging you to help me meet my promise to Mel to raise 30 thousand dollars or more. All I ask of you is $2.00 each. And if I can get all 15117 from the month of February visitors to send that, the goal will be reached before we know it. So please get your 2 bucks in the mail so we can find out why this is happening to our children and then find that cure. IĎll see if Stan get make a graph or pie chart or something to keep you updated on our progress. (Hey Stan! You busy? ;-) )

I am not sure how we would have got this far with every single one of you and your prayers. I know Mel now knows just how many of you there are and I am sure she will watch over each and everyone of you in her own special way. So keep your hearts, minds and eyes open, you will see her in your everyday and your every dream. Thank you all for everything that you have done for us. Itís funny. it will still never be enough to just say thank you, but right now thatís all I have to offer, well that and our prayers. I will keep updating to let you know how our lives are progressing without our princess so please continue to stop by and check in on us. And if you have time please leave us a little message in the guest book just to let us know you stopped by.

May God Bless each and every one of you in great, great ways as he has blessed us with you.

Forever Melodyís Daddy

Rob

 

Update on 3/17

Well here we are, 2 weeks ago our Princess went on to Heaven to await our arrival and start out on an adventure that we only dream about. Today is also the first full day that we will spend in our home just Devin, Deb and Me. All our company has gone home to resume there normal lives and we are left to pick up the pieces. This is where it is going to be difficult spending our days by ourselves. Especially for Deb. I will be returning to work tomorrow and she will be left here in the quiet house alone.  Let me tell you it is quiet. Deb just ran off to take Devin to school and you could hear a pin drop in here. I will at least have my work to distract me but she will be here with her emotions and many, many reminders of Mel. (Not that thatís a bad thing)

I was in the desert in the beginning of the week and everyone took off for ride and I decided to stay behind. It was so quiet the only thing you could hear was the wind blowing. And as I do often, I was talking to Mel. It was harder than I had ever imagined, being by myself I mean, I would like to think that Mel was right there with me by my side but I, like most men, are visual in our quest to know things. I love my little stinker so much and at times it is unbearable, the knot in my stomach is horrible and the physical pain in my heart is like nothing I have ever felt before. I can only imagine what it is like for Deb and Devin now that the distractions will be gone.

As for our trip, even though Iím out of sick and vacation, I will be taking time off. We are planning to leave around the beginning of April, spring break for Devin. (He has already missed so much school this year) We are going to be out and about for 2 to 3 weeks. We could stop by some central places to see any of you and we would love to do so. I am not sure how far we will be going but there are a few people on my list that I just must see. So, if you would like to help us plan our trip and would like to visit with us for a bit email me and let me know where you are and we will do our best to make a stop. Now for all you east coasters! I do not think we will be able to make it that far in the limited amount of time we will have but, we will be in the New Jersey area I think in September for the Matthewís Miles walk. We will only be spending a week or less there so our time will be limited then as well. What a transition to bring up Matthews Miles.

As of yesterday, the total to date that you have sent in the mail or donated in some other way is just over $2400.00. A long way to that promise of $30,000.00, but a good start.  Not to take away from Matthew or his family, but itís cool to see how some of the envelopes are addresses some say ďMelodyís MilesĒ and some say ďMiracle MilesĒ, all fitting and all wonderful. Stan has placed a really cool graph on the donations page so you can watch the progress of the fundraising. I have some ideas to get to that goal but I will still need your help with the $2.00 campaign. If you are having trouble seeing the address or have any questions please email me and I will do my best in getting back to you. If you would like to do a fundraiser for brain tumor research and you are local or kind of local to us and we can help you in any way please let us know, or if you have any ideas fore fundraising please email me.

As for our lives! They will continue as difficult as it will be they will continue. Things will never be the same. We are not the same people that we were on March 22, 2004 and we never will be. We still search for answers that I know with time will be answered although I donít think I will get them in this world. Yes, we still wonder why, why did this happen to Mel, why did this happen to us, why did this happen to some of you and why will this happen to so many others in the days, weeks and years to come.

We have many people and companies to thank for all there support in helping with Melís services and when I collect all the information we will be publicly thanking them here. You have not been forgotten, we just want to do it right.  

In the past couple of weeks we lost two more children that we cherished and have come to love Rayanne and Emerald. Please go by there pages and show their families the same support that you so graciously showed us. I know there are so many more kids out there that are in need of prayers, please do not forget them. I will be adding many more links to the Melís Friends area on the home page, too many. We have to find a way to stop this cancer business.

Thank you all again for stopping by and letting us share with you. Please remember to leave us a little message in the Guest Book and donít forget your $2.00 they both make a difference as small as they may seem. God Bless you all in ways you will never forget.

Melodyís Daddy Forever

Rob          

 

 

Update on 3/20

Ok for those of you who can not see the graph on the Donations page we are almost 1/6th of the way there the new total is $4424.40. Alright that's a good start. If you haven't had the chance to send you $2.00 yet, what are you waiting for ;-) . Lots of you have said that you are even asking friends and strangers for there $2.00 alright way to go. Lets raise this money together and beat the crap out this brain tumor business. Come on i cant do it alone I really need your help.

We spent the weekend in the desert and had a great time. I will update more later in the week. Mel must have been there there were thousands of butterflies it was awsome.

Thank you for all your prayers and well wishes. Thank you so, so much to all of you who have sent your donation for Matthew's Miles. And thank you in advance to those of you who will be sending yours. Let do this for the kids facing this today and all the kids yet to face it. Lets do it for Mel, lets not make this all in vain there has to be a reason and maybe this is it.

God Bless you all we love you all

Melody's Daddy FOREVER!

Rob

 

Update on 3/31

I have sat down at this computer many times to update but just never really knew what to write. I have struggled with what to say or how to say it. The days have been really hard especially in the mornings for me. There is not a day that goes by that I donít loose it and become a crying idiot. I talk to Mel constantly, asking her to let me know she is ok and that she is having fun. I ask her what it is like in Heaven. Have you met all the other kids? Do you all play together? Do you know how much we love you now? I ask her if she knows that we did everything we could and that we never gave up. And other times I just talk to her about the day or whatís going on at that moment. I tell her how much I miss her, how much I love her and how I canít wait to see her again.

The last few days have been really tough for us. Why one day is harder than the others I do not know, they just are. We never really ok, we just make it through the day. Every night when I go to bed I thank God for the day and the things that he has blessed us with that day. I thank Him for bringing all of you into our lives. I ask Him to give special blessing to you all just for being here for us. I ask Him to heal all of our Caringbridge friends and to bring peace to their families. I ask Him to give comfort and happiness to those of us with out our babies tonight. I ask Him to forgive me for all my sins past and present. And then I talk to Mel some more. Again mostly the same things, but sometimes I get silly with her.

We have been preparing for our trip next week and at times I am as excited as a school boy waiting to go Disneyland for the first time ever. Figuring out stops and times of arrival trying to fit in as many people in three weeks as I possible can. I am hoping to keep a journal and take many, many pictures on our trip so we can share it with you when we return.

We have had a couple of firsts since Melís passing the 1st week, the first Easter, and we are coming up on the first month. Easter was just ok; it just wasnít the same, more like another day just with lots of candy. The biggest first for us will be in May, Melís 8th birthday. Last year on her 7th birthday I told her if she thought this one was good wait until next year. That day will be the hardest day we have yet to face. I have already asked for it off.

The days seem to be getting harder as time goes by. I canít really explain it; the emptiness gets greater and the pain worse.

I am not a dreamer. When I say dreamer I donít go sleep and have dreams and when I do I can never remember them. So here I was today lying on the couch this afternoon taking a nap and I had a dream so real that it made me cry. It was the most real dream I have ever had in my entire life. I could smell things, feel things and hear things. I have to tell you again that I NEVER dream, let alone during the day while taking a nap. Deb is the dreamer in the house. And like I said if, and when I do dream I can never remember what happened in it. So here is my dream about Mel. But it was more like a visit.     

It goes like this:

I was walking into our family room and there she was just, sitting in the recliner just as perfect and as beautiful as could be, wearing one of my T-Shirts (a red one I think) as she always did. She was smiling and put her arms out to me. I ran over and grabbed her; I held her so tight and was kissing her all over. I was asking her questions. Questions like, are you ok? Can you hear us talking to you in Heaven? Did you meet all the other kids?  Are you happy? Can you stay? So fast I was asking her these questions, so fast. She nodded her head yes to everyone except the one about staying. When I asked her the one about can you hear us talking to you in heaven at first she shook her head no and smiled really big and nodded yes. Just like a stinker to tease her daddy. I was crying uncontrollably but I could hear myself crying.

I was trying to call out to Deb but couldnít and just then Deb came around the corner and I said look who is here, she said who and could not see Mel right away and then all of the sudden she could. We all hugged and cried and kissed. The next thing I knew we were up stairs. Mel was in the shower Deb was getting some washcloths, I peeked in the shower and she was lying down on her belly with the water running on her back moving her legs back and forth just like she always did. I said to Mel ďyou have to check out these new huge towels that mama found at Target.Ē I reached down to grab a towel and couldnít find one. I grabbed what I thought was some other towel. As I was just about ready to tell I could find it I realized that I had it in my hand. A huge towel that Mel would have just loved.

Again out of nowhere I was out in front of the house and Deb was walking out the door, I asked Deb ďIs she still here?Ē She said ďno, she was gone as soon as I opened the front door.Ē Then I was awake!

Although I didnít see it in my dream (I donít think) I knew she stand and walk and jump up and down. She was perfect and looked like she would look today if she was here and not sick. Perfect with her beautiful skin and eyes and that most special red hair, long and clean and just perfect. She never spoke, or I never heard her speak.  

We asked her once, towards the end when she was sleeping a lot, if she was seeing angels and she said yes. We asked her if they told her their names or did they talk to her and she told us ďthey couldnít talk because they were too slow.Ē

(This is Debbie, Melodyís mom.  Iím checking out the update before Rob posts it.  I have to tell you, we have been together 17 years and married for 13.  Even when he talks or yells in his sleep, when you ask him what he was dreaming about, he ALWAYS says he didnít dream.  For him to have such a vivid dream, have it be about Melody, and remember it in such detail, is incredible.  I know that this wasnít a dream, it was a visit.  Iím so happy to know that she is happy and healed and Iím jealous that she didnít come to me first!)

Well thatís it for now. I guess I just had to share that with you. Oh, before I go an update on the fundraising for Matthewís Miles. If you haven seen the new total yet as of yesterday it is $5125.40. It is going a little slower than I had thought it would. I thought for sure that my goal would have been reached in no time. No matter, I will take what I can get I guess. If you are waiting to send you $2.00 for a special occasion, it would be really great to be much closer to that goal when we get back from our trip. To those of you who have sent your donation, Thank you,  Thank you,  Thank you, Thank you, Thank you, Thank you!

God Bless you all and Thank you for being here with us.

Melodyís Daddy Forever

Rob

 

Princess

We love and miss you more than anyone can imagine. I hope your Easter was great. Tell Cheyenne, Issac, Savannah, Emerald, Celeste, Conner, Hanna, Paulina, Troy, Rayanne, Ashley, Delaney, and everyone I am for getting and I know I forgetting tell them we said hello. Tell those boys I said ďNO KISSING!Ē When I get up there with you we are going to have so much fun. Come and visit me again and, again and, again. I love you stinker I can not wait to be with you again. Save us a place.

Mommy and Daddy

 

Update on 4/4

Today was a travel day for us. Each day we travel we are going to attempt to travel 650 miles. We did reach our goal today, stopping in Deming, NM for the evening. The drive was pretty good, about 10 hours or so and pretty windy but uneventful. Devin kept himself busy with video games and napping. Deb kept herself busy by reading and napping as well. We are going to attempt to get an early start in the morning. Melody was very present today. Right after talking to her and asking her to let us know she was with us the windshield wipers came on by themselves. This was after driving for about 3 hours. We know she is with us.

Off to Texas

Update on 4/5

We didnít get started as early as I would have liked. We left the camping area in Deming, NM at about 10am and then needed to stop and fill up. We have been doing all our eating in the RV. Deb went grocery shopping before we left so as not to fast food it the whole way and it will save us money as well.

It was extremely windy today, which slowed us down a lot. Now I am not talking a little breezy we had 20 to 30mph winds with gusts up to 50mph. Now let me tell you I am pretty sure we found the only two 50mph gusts in the state of Texas today. A couple of times I felt my stomach drop out of my body and thought I would have to change my shorts.

We arrived at Roy and Donnaís late in the evening. Roy, Donna, Coach Slate, Hanna, Christine, Chris, Natalie, and M & M were all waiting for us out front. It was as if we knew everyone for our entire lifetime. Oh I almost forgot Cinnamon was there as well and welcomed us with many, many kisses. We had so much to talk about and we did, but not for to long it was getting late and it was an exhausting day so off to bed we all went.

 

Update on 4/6

Up kind of early. And ready to here all the wonderful stories about Cheyenne and to share our stories about or last months and days with our babies. And talk we did all day! There was so much in common we had. From the things our kids did the same to the horror stores from the hospitals and doctors and hospice. Now I am not sure if this made things easier for any of us. Some things were good and some not so good. As we would talk there would be moments of silence that was understood by everyone.

Roy told us about a dream that he had about the Cheyenne and Melody walking around the garden and pointing and laughing at something. I know they were there together. Melody would have loved and I am sure today loves Cheyenne. They are so loving and giving and the likeness are amazing. I know they are together as are all the other kids running, playing, and giggling until they fall down in hysterics.

Devin loved being around all the animals, Blackjack the horse, Cinnamon, and Cricket the cat just to name a few. He wanted so bad to take Cricket home with us he even renamed him Squishy. Devin walked around with all the sheep and the Donkey named Teddy. He is a guard Donkey though and his job is to guard to sheep and let Roy and Donna know if they are in any trouble. What a great place to raise your children.   

This evening we went to dinner with Roy and Donna and their entire family, their extended family and of course Coach Slate and the girls. Before meeting everyone we stopped buy Lawnhaven and visited Cheyenne. It was a bittersweet visit for me I wasnít sure how I felt about it. I talked to Cheyenne while we were there and told her how much she is missed by so many. (As if she doesnít know). It was her Brother Michaelís b-day. It was a nice time and good food. But it would have been much better if our girls were there with us physically. I mean. Itís like Roy said. All the laughing and having a good time is not so fun anymore. Remember, when you are with us while we are laughing it up and having a good time right at the front of our minds is our babies. The things you say and the things you do and just being with you reminds us of our stinkers. The smallest things you do and say remind us. That is a good thing; we donít ever want our children to be forgotten.

We stayed up late talking some more and sharing the two things most we had in common. Only to go to bed again with them on our minds as we do every night.

Roy and Donna, I did not want to leave, I could have stayed forever. You are wonderful people and it is a privilege to have met you and shared this time with you. We know how you feel because we feel the same things have the same thoughts and wishes for the future of our lives. You have a wonder family and it to was a privilege to be included in your celebration of Michaelís birthday. We love you guys and cannot wait until the next time we meet.

Coach Slate, What can I say, you are a special person, and those that have met you in the past, and those that will meet you in the future are as we are, lucky. Lucky to have you in our lives!

And as I said before we departed and said our goodbyes, you are all welcome, at anytime into our home.

Off to Arkansas

Update on 4/7

We left Roy and Donnaís mid morning to go to Lisaís. We drove through some of the most beautiful county we have ever seen.

On the way to Lisaís we stopped of Dallas to visit with Carol, Sydneyís Mom. It was only a short visit but a good visit. We talked about our kids and shared our stories. We had some lunch and laughed a little and even cried a little. Carol was great support during the last year with all her guest book entries and email. We had a little lunch and said goodbye for now. Carol, if you ever in California again you had better call.

So back on the road we were again. Now I had expected to be at Lisaís in the late evening but for whatever reason weather, distance or just stupidity on my part we didnít get in until midnight. Arggggg, talk about a long day. We arrived at the lake right down the street for Lisaís and got settled in for the night.

At some point during our drive Deb broke down. I tried very hard to comfort and support her but I too, while driving might I add, lost it too. I am sure it was from holding it all in at Roy and Donnaís. I could not stop crying for sometime. As soon as thought I was ok, it all came right back and I started again. So we cried and grieved together.  

Update on 4/8

In the morning Lisa came over and picked us up to go to her house. We had breakfast and started to talk about our babies. Now things were much the same at Lisaís as they were at Roy and Donnaís. Again the similarity in our children is scary.

Lisa is an amazing person she and I are so much alike. And for Deb it was a great visit. Deb and Lisa talked and laughed and cried and talked for hours and hours. Asking each other questions and telling each other how they felt. At this point I just stepped back and let two grieving moms be together. Know I donít know why the connection that these two ladies had was so strong (Ok yes I do and you do too) but it was good to see Deb finally talking about and sharing with another parent.

Now I have to tell you about Devin and Cassie, they had a blast together. Devin was a little bored earlier in the day until we went and picked up Cassie from the school bus in the afternoon. First we went to Loweís to pick up some things to hook up Lisa and Cassieís CATV and then to the bus stop to pick up Cassie. They sure will silly kind of shy at first and the chasing each other around and playing together just like they had always been friends. Now to tell you about Devin helping pull the CATV wire under the house. First I have to tell you that Devin is afraid to be in a dark room by himself. Devin crawled under Lisaís house in the dark, with the bugs and by himself about 80í or so with only a flashlight and me yelling at him asking if he was ok. HE IS THE MAN! I do think however is Cassie hadnít been there he would not have done it. He was showing off for a girl.

Jerry came over after work and almost after dinner. Jerry, I know it was a long drive but I hope it was worth it. We all had a great time sitting around having a couple of drinks and talking about everything. And once again there were those moments of silence that everyone just understood.

Update on 4/9

We went to Lisaís again for breakfast. Devin and Cassie played some games while Deb, Lisa and I talked some more. Cassieís dad came over to pick her up in the afternoon and Lisa drove us back over to the lake so we could get on the road. Once again, I did not want to leave and could have stayed forever.

Lisa, you are one of the most real people that I have ever met in my life. You tell it how it is and donít hold anything back and for that I admire you. Jerry is a good man and itís ok with me if you continue to see him ;-). Cassie is a wonderful young lady. Both she and Savannah are very lucky to have you as their Mommy. Please come and visit us when you have time you are always welcome in our home and our lives. It was a privilege to have met you.

Off to Dawnís in Oklahoma

Update on 4/10

It was a good drive to Dawnís it took about five hours and was again uneventful except for some wind.

We arrived at Dawnís in the early evening just in time for dinner. Devin had called Dawn when we were just down (12mi) the road getting gas ($2.05 a gallon for all you So. Cals. who are paying $2.55) Anyway, he told Dawn we were just leaving Arkansas and would be few hours. So Dawn said she would go the store later and get stuff for dinner. Well 15min later we pulled up in front of her house. It was pretty funny.

We went out to dinner tonight just down the street from OU and had a good meal and shared our stories with Dawn about our trip up until now. Ok, remember the cat Cricket at Roy and Donnaís? You know the one Devin renamed Squishy? So here we are at Dawns and there is a very friendly cat out in front of the house. Devin and the girls just had to feed it and Devin says, ďI shall call him Squishy number two.Ē ďCan we take him home?Ē Yea like we need another animal to add to our collection of 2 dogs and 2 cats and whatever little critters Mr. Fuzzy drags in. Well to say the least, Devin and the girls (mostly Devin) convinced Shane to take the cat home and Shane agreed to name the cat Squishy number two or Duce or something like that.

Update on 4/11

We woke up late today. Dawn made a wonderful breakfast and then we lounged around most of the day and when Deb and I finally got moving we went over to Barnes & Noble so Deb could get some more reading material and then to Loweís to get a few things so we could get some things up and running for Dawn. I got to hook up and extra cable box for the girls and hook up the refrigerator ice maker and water dispenser and cleaned out the drier so it would actually dry stuff. Man I thought this was supposed to be a vacation? Just kidding, I enjoyed doing it.

Shane came over late morning and we sat around talking guy stuff and then while Deb and I were gone he brought over some steaks and cooked them on the grill.

Now the excitement for the day was awaiting the thunderstorms that were coming in. As they crept up on Norman we got a few sprinkles and a little bit of wind. As they got closer we watched on the news the progress of them. When they finally arrived it was awesome. The rolling thunder and beautiful clouds were something else. We watched the clouds spinning around creating a wall cloud sucking up the clouds surrounding it at a falling toward the ground. It was amazing here we were watching a tornado trying to form just a half a mile away and in the distance we were seeing the helicopter that was sowing it on the news just inside the door. It never did make get organized enough to become a tornado by us but later that same series of thunderstorms did drop some to the ground (about 50 miles to the north west of us) and do some damage, but as far as I can tell no one got hurt.

We went to bed a little disappointed that we didnít get to see a world famous Oklahoma thunderstorm and only got a few sprinkles out of the whole deal.

Dawn had to go off to work today so it is even more of a lazy day today then yesterday. The girls stayed home from school (you know itís such as special occasion) and right now the girls and Devin are in the ďToyĒ room playing games and watching TV.

Deb is going through all of Dawnís pictures and picking out the ones of the kids and us and will go to Wal-Mart and make copies to go home with us. I am sure we will share them with you when we get home as well as the pictures we have taking while out and about.

I am not really sure what the rest of the day will bring for us, no thunderstorms forecasted for today just lounging around for the big drive to Morning Sun, Iowa tomorrow.

Up until this point in our adventure we have met many special people for the first time. People that we have something in common with something so horrible that I hope none

 

Update 5/3 

I promise an update on the last part of our trip soon.

Itís been two months today and it is not getting any easier. As a matter of fact it is getting harder. The days get worse as they move on they get longer and harder to get through every day is harder than the next.

We miss our princess more and more each and every day. Our hearts feel more and emptier as time goes on. And the tears come more often. To quote a Shania Twain song ďAnd it only hurts when I'm breathing, My heart only breaks when it's beating, My dreams only die when I'm dreaming, So, I hold my breath--to forget!Ē Ok so we donít really hold our breath but the chorus to this song rings so, so true. Words can not even begin to express to you the pain and the heart ache that we feel. Only those of you that have experienced the loss of a child understand.

It is weird that one day Deb and I are talking about and wonder what Mel would be doing today what would her life be like and what would it be like in the future. The things that we were supposed to do together as a family, I looked so forward to scaring her boyfriends and then maybe one day accepting one of them and walking her down the aisle and of course the father-daughter dance, telling her I hope she will be as happy as her mother and I.  I used to daydream about that day and think of how happy I would be for her; even then I would have tears running down my face just as I have now. Well the weird thing is that the very next day we went to Emeraldís page and all those same thoughts were in Kimberlyís update. She knows, as do too many other parents know what we think and feel.

Tuesday the 10th of May will have been Melís 8th birthday. One year ago on that day she had one hell of a party and I would tell everyone just wait till next year its going to be even better. Boy! Was I stupid or what! Sunday the 8th is Mothers day and I have NO idea what to do or what even to say to Deb. I feel like a helpless child. Join us if you like on the 10th releasing pink or purple balloons at 4pm pacific daylight time or 7pm eastern daylight time. Put a note on it or, even better, in it. End your note with this web address and invite people to visit and share in her story as well as all the other kidsí stories and send it to the Heavens for her to see. We will have balloons here at the house if you want to join us here if you are close. If any of your messages reach just one more person then it would have been more than worth it. If you would like send us a picture of you doing it and tell us what your note said and we will put them up on the page. And if you please light a candle that night.

Letís see what are we up to for Matthewís Miles ok since we have been gone you have sent $1056.63 OH! And I cant forget the $40.00 I won playing Texas Holdíem on a cold rainy night while in Colorado. Thanks Curt and Wayne. So that brings us to $1096.63 for a grand told of $6221.03. Getting closer! Thank you to all of you that have helped and thank you in advance to those of you that will send your donation later.

 

To Mel our sweet, sweet princess,

I am sure you know how much we love you and miss you. It is unbearable at times and we canít even begin to imagine how we will get through the rest of lives with out you. It is a struggle to wake up every morning and face the day with out you. And just as hard to go to bed at night knowing that only in a few hours we have to do it all again. You are the first thing on our minds when we face the day; you are on our minds all day and, the last thing on our minds at bed time. Princess we miss more today then yesterday and will miss you even more tomorrow. We miss all you silliness and your giggles. We would give anything to see you one last time, anything to hold you hand again, anything to smell your sweet smell one last time, anything to her those words ďI love you toĒ just once more.

We can not wait for the day when we will join you as a family again and you can show us all around the Heavens and introduce us to all your new friends. I keep waiting for more dreams and signs from you and you have to remember that you have to be very obvious to Daddy because I donít always get things like that right away.

We love you stinker very much! We miss you more than anyone can ever imagine!

 

Mommy and Daddy

 

Update 5/10

Melody,

I remember thinking before you were born how there was no way I could love another child as much as I loved Devin. Boy was I wrong!

The day you born I remember running around the hospital looking for Grammy because you were on your way out, and fast. At the same time the nurses were running around looking for me because you were only minutes from coming into our lives.

The minute I saw you I knew I loved you as much as Devin. What more could a daddy ask for, a little girl to spoil and watch grow into a young lady and more beautiful than I ever imagined. At that moment our lives were perfect one boy, an older brother to help protect you in life and you the perfect, most beautiful little girl I have ever seen in my life. We were the perfect family from that moment on.

As you got older you wrapped me around you little finger more and more and caught the attention of everyone that passed by you. With those stunning eyes and that red hair that people just wanted to touch. You grew into the prettiest little girl that any daddy would have proud of.

A few years later you would start school and amaze Mommy and Daddy at just how smart you were. You had boys chasing you around for kisses. You were ALL girl. You would have more shoes than Mommy and Daddy combined. And you would have to dress pretty every day to be as you would say, ďPopularĒ.

Even then you before you got sick, you touched the lives of anyone that meet you. With your feelings on the outside, the love and caring for others how anyone could not fall in love you is beyond me.

And then, well you know stinker, that blasted tumor. The one thing that would change our lives forever. Even then you would touch the lives of thousands of people with your antics. More people than ever imagined learned about you what we already knew. They would come by the hundreds saying what a beautiful young lady you were and everyone one of tham would fall in love you just as we did that moment we first saw you.

Princess, we are going to be sending you some messages today. Let us know when you get them. I hope this day is wonderful for you. I told you last year after your party and you told me that you had the Birthday ever, I told you just wait until next year it will be even better. I hope I was right, I hope you are having that best day ever I am sure you and all your friends are celebrating this day with lots of fun things.

I can not wait until that day that I am with you again to celebrate this day. I miss you something awful. I am not even going to attempt to explain it to others. I love you princess as much as that first day I saw you, 8 years ago today.

I will see you in my thoughts and dreams, until that day we are together again.

Daddy

 

Melody,

Baby, I love you and miss you so much.  My heart aches for you.  I canít wait to be with you again.  Happy Birthday.  I hope one of your great-grandmas made cupcakes for you to pass out to all of your friends.  Catch our balloons in Heaven and read the cards.  Please visit me in my dreams.  I love you princess.  

Mommy

 

Update 6/7/05

Ok, OK, so itís been awhile since I have done an update. I am sorry. Itís been kind of rough around here the past few weeks. Even through all the things we have done together as a family and the things we have done with friends. What you donít see is the whispering between Deb and I in the background. Whispering about what Mel would be doing while we are doing this. Or what a good time Mel would have had doing that. Or how Mel really would have liked this place. Or just how much we miss her not being a part of anything we do anymore.  

It is difficult to do things without her that we used to do. Itís difficult to do new things knowing how much she would have loved doing them with us. And we have done these things. Camping in the desert, school functions, a trip to the river, going over to friendís houses, helping with the move and visiting with Bammom and Poppa in their new house. All of these things are so difficult it is hard to describe. But even through the trying times we still do it, you just donít see the pain and the anguish that we share as parents and as a brother.  People who donít know us would never know what just happened unless we told them, and we donít go around announcing it.

We have done a few things in memory of Mel since my last update. We did a walk with Childrenís Hospital during the Celebration of Champions, The balloon release for her birthday and, a Celebration of Life at Childrenís Hospital. We also lived another month with out Mel, the 3rd month, on the 3rd of this month. All very difficult things to do but done anyway! Devin will be attending a camp for bereaved children that have lost a family member this weekend and will be attending another camp this summer. Hopefully it will help him to open up and share his feelings even if itís not with us.

I have returned to work, and Devin, well he is Devin. Every day is still a struggle. Hard to wake up and even harder to go to sleep! But we do get through them. Some days wondering how we did it or where did the day go. Not that the days canít be short enough for us. You see, each day is one day closer to being with Mel again, a day that we all look forward to. I never thought that I would look forward to dying but I guess now there is something to look forward to in death. Not that there wasnít in the past, but itís just, now there is even more of a reason, a more personal reason. The reason, MEL! We are not suicidal and would never take our own lives; we just miss our baby and look forward to being with her again.

I have put up pictures of our April trip and of the balloon release. I do have more pictures to add of some more people that have sent there pictures of their balloon release for Melís birthday.

As for the fundraising effort well I havenít had, ok, ok made any time due to my laziness to write the letters that I am going to write. But I will! So the total stands as is until something drastic changes.

And for the lack of presences in your guestbook, well I present to my laziness again. Donít think that I donít stop by. I do, as often as possible. My days are a little long: 3am to sometimes 10pm. Thatís awake time not at work time, what do think, Iím crazy! Thank you to those who have left messages in Melís guestbook they mean the world to us. Thank you also to those who have visited Melís page and havenít left a message you to mean the world to us.

No we havenít forgotten those of you in our lives that we said we want to get together with and havenít. We will get together; we are just trying to balance things a bit.

I also have an idea that you may you may or may not be interested in. Since Caringbridge has made it more difficult to link other pages to the sites. I would be willing to create a link page off of Melís ourmelody.net site and you can link to it since itís not a Caringbridge site. If there is enough interest then I will do it, otherwise I will just continue with the links on the home page as I have been doing. It may jeopardize the guest book that we are using but, so be it for the cause. We know how important the links are to us and to you.

There was so much I wanted to say. So many things I wanted to share with you but I have forgotten most of them. It figures, thatís about how our lives are today. Forgetfulness is one of the primary things in losing a loved one. Oh and yes, I am angry. Yes, still angry almost always angry. Some say it will pass with time, others say it will last a lifetime. I guess only time will tell.

A couple of more things before I go. Tina, Hannaís mommy is planning a balloon release on the 9th of august to HONOR Hanna it is to be at 5pm. She asks that as many people as possible to release a balloon or several. She says well here read it for yourself it will be much easier this way. From Hannaís web page.

 

 Iím thinking of having a balloon release on August 9th. She died at 5:15 that morning. Since thatís not a very appropriate time for a balloon release, I was thinking of maybe doing it at 5:00 in the evening. Some friends and family may gather at the cemetery, but what Iím really hoping for is that EVERYONE will participate in this with us. You do not have to go anywhere special. You could just step out your front door. The meaning will be the same. I just want everyone everywhere to release a balloon in honor of Hanna. Iím also hoping that anyone who reads this and has a website will mention it for me and help spread the word. I know that there were many people all across the world who were regularly checking on Hanna and praying for her. Many of these people might not visit her site much anymore, but might like to know about it. I just think it would be really nice for her to have balloons going up in her memory all across the country.

I know I am leaving out many, many people and many, many good causes. Like Ryan Brown who is need of your prayers, and Matthew of Matthewís Miles who is preparing for surgery again. Leah is a little girl who has the same tumor Melody had and needs prayers and good thoughts.  Or the many other children and families that are in need of your prayers. Unfortunately they are not hard to find you just need to look      

Please remember all our friends in the Caringbridge family and those just outside. Please remember all the parents and siblings with out their child our loved one tonight. Please pray for miracles that they want and need so badly. Thank you all for continued support and God Bless each and every one of you.

 

Melodyís Daddy

Rob

 

 

Princess,

You know how much we miss you and much we need you. It is indescribable to others. Thank you for all the Mel moments that we have had. Please, PLEASE come and see us, let us know you are here. I keep trying to look with my heart and not my eyes but thatís how we are down here. I hope you had a wonderful birthday celebration with all your Angel friends I can only imagine what the day was like for you.

We will be there when the time is right, although that day will not get here soon enough for us. Thank you for riding into work with me in the mornings, I can sure feel you there every morning. Oh and thanks for, you know, the whole work thing. You can help all the children now like you said you would do, you are in the best place to give them that help.

We love you baby so, so much. More than people will ever understand. We miss you from the time we wake up until the time we go to bed and then, in our dreams.        

 

Love,

Mommy and Daddy   

 

Update 7/7/05

Please pray for Ryan Brown and Leah, and there family's today they are not doing well at all.

I will try and update later today.

 

Rob

 

 

Update 8/20/05

I actually sat down yesterday to write an update wondering what I was going say. I was going to tell you all about Devinís camp, the Celebration of Champions, and the Celebration of Life, all that for Mel

I am sorry I havenít updated in a long while. Devinís summer sucks for the most part. Deb and I are doing ok. Our relationship could be better we have had some diffucult times but we seem to work through them.

Anyway this is going to be short. I will try and update later in the week. You see yesterday my brother was killed in a car accident. The same brother that gave up his hair for Melody to cut.

Please pray for my family to get through all this just 5 Ĺ months after Mel. Pray for my Mom and Dad to find some kind of peace. I know Mel was there to Meet him and to show him around and that they are together.

Please pray for all the kids! We have lost a couple more babies to this dammed tumor. Please pray for there families.

I promise I will attempt a LONNNGGGG update later this week. Thnak you for stopping by visiting there arenít as many of you as there used to be but that just makes you that much more special to us.

God Bless you all

Angel Melodyís Daddy

Rob

 

Princess Melody,

We Love you, and we miss you something terrible, but I guess you already know that. Please take care of Uncle Bill and tell him we love him.

 

Daddy  

 

Here is our brother Billís obituary and services information.  For those of you who have left kind words and well wishes, we thank you for your continued support.

 

William Coffin Schleigh, amiably known as "Bill" age 33, was called home to our Heavenly Father on August 19, 2005.  Bill was born to Robert and Theresa Schleigh of Hemet, his devoted parents, in Philadelphia, PA on October 06, 1971. Sister Karen and brother Robert, both Hemet residents, will deeply miss their baby brother. Bill is survived by his daughters, Silver 11, and Dakota 7 of San Diego, whom he loved endlessly, and Hemet nieces and nephews who will miss him tremendously. Bill was kindhearted, a great friend, and had a smile for everyone.

Services will be held in Hemet at Our Lady of the Valley Catholic Church on Friday September 9th at 10am. Bill will be laid to rest in the San Jacinto Valley Cemetery with a gathering for family and friends to follow at 1401 Teakwood Place in Hemet. A final memorial will be held Saturday September 10th at 11am at Mission Bay Beach Visitors Center.  All are welcome.

 

Update 9/28

Ok, ok, ok. Sorry for the llllllloooooooonnnnngggggggg time span between updates. Itís been kind of a tough year around here. Thank you all for you continued support!

First I have to tell you that we WILL be doing Matthewís Miles. We will be arriving in NJ on the 6th of Oct and heading home on the 11th. We have already sent some of the money that you so graciously donated and we will be giving approximately $5200.00 more for a total of about $6200.00. Yeaaaaa. Just wait until next year.

As I said in my opening things have been tough of lately. We are constantly thinking of Mel and now my brother as well. And let us not forget all the losses in our Caringbridge family. We do still check on all our friends web pages but it has been hard to find anything positive.

Lets see Devinís summer wasnít one of the best he has ever had. We just didnít do a whole lot. He did make to a camp for a few days and had a pretty good time considering what it was for. He started middle school this year and has had few problems adjusting but doing well for the most part. We did make a desert trip for his birthday last weekend and we all had a great time.

Deb has gone back to work and is adjusting ok to that. Of course still missing her Melly something awful. We both have attended a few functions but on by Childrenís Hospital of San Diego mostly things to remember or children. I thought those things were supposed to help you cope with the loss but it seems for me anyway to make things worse for a while. Not that they are ever really good.

I donít really know what else to tell you. I will try and do a better job at updating and I would like to change the home page a bit. I am just not sure what I want to do. My Niece KC gave me a Julianna Banana bracelet last week. Itís a very pretty pink with a star in the middle. Boy did the guys at work get a kick out that. But I am ok with that every time someone notices it or I notice it I think of that little cutie and it puts a smile on my face.

Well like I said we miss our little stinker something awful. Every day is a challenge some more than others. We awake to her in our thoughts and go to bed with them. WaitingÖwaiting to get a sign from her. There are going to be some tough holidays ahead but I know we will get through them. I know in my heart that Mel would not want us to be sad on these days or any day for that matter. I will still have a smile for a friend or a stranger but just underneath I will be thinking of her and wondering what she is doing and whom she is with.

Ok I will update at least when we get back from Matthewís Miles, maybe even before but donít count on that. Remember there is still plenty of time to donate to Matthewís Miles if you havenít already. Please remember all our friends and familyís in need of your prayers. Remember all those that had to go home before us and their families that are missing them terribly. Remember all our fighting Men and Women that home and abroad. All the hurricane victims and the Men and Women helping them.

Please remember my buddies Matthew, Cameron, and Calvin and their families who are in need of prayers today and everyday. And please pray for all the other children.

 

God Bless you all

Rob

 

To our precious Melody,

Some days we canít stand not having you here with us. Some days are tolerable. And others it seems like everything is going to be ok. But every day we miss you! We sometimes feel you next us but at other times you seem so far, far away. We love you baby more then you can even know in Heaven. The day cannot come soon enough when we are all together again and what a glorious day that will be. Tell all your friends that we said hello and we think about them often. I can just see you all jumping up and down on the bed. Tell Uncle Bill we love him and miss him.

We love you princess more than we can every express in words. We will see you when we get called home.

 

Love you forever stinker

Mommy and Daddy          

 

Update 10/15

Letís just say that Matthewís Miles was great, successful, and WET! Yes, thatís right, we got WET, very, very wet. But worth every drop of water!

Debís back was bugging her so she opted to follow around in the car and take pictures. I walked with Angel Rachelís Mommy and Daddy, Jeanne and Steve, and letís not forget Rachelís adorable little sister Danielle. I just fell in love with this one and could have just eaten her up. Not that she wanted to have much to with me. While walking Jeanne, Steve and I compared stories, feelings, and thoughts. It is scary just similar our feelings are and how we all think the same way. Thank you for the company Jeanne and Steve, I am sorry we all have to endure this, but in some strange way we have all been brought together to deal with it together.

Let us not forget the Passarellaís that take so much time out of there unbelievably busy lives to put the entire walk together. All of your family and friends are wonderful, wonderful people that I take privilege in meeting and participating in the walk. It was good to hear about Matthewís news the day of the walk; it just goes to show you that prayer does work in whatever strange ways. Thank you so much for allowing us to be apart of your lives, however small.   

We met many, many great people while we were there (whoís names I have forgotten now), each one a special person. It takes people like you and many, many more to help us get the word out about this terrible thing that is happening to our children. There were about 100 or so that came for the walk all of us there for the same reason. To stomp out brain tumors! To make them non existent!

As for the rest of our trip it was great to spend time with my Aunt Alice and ALL my cousins that I havenít seen in many, many years. We plan to make it a yearly trip to be apart of the walk and spend time with family.

Since returning home Deb has been in a funk of sorts, she says she is just tired but I know it is more, itís about Mel. She is in a depressed mode that I havenít seen her in for some time now. What brings in on? Who knows! Holidays, memories, thoughts, life. Whatever it is we will get through it together.

I dreamt of Mel the other night. Not a visit just good dreams of the past. That night before I went to bed, I asked her to let me know all was well and that she was ok. I havenít had a dream about her for awhile so it was good to have that night. Oh how we miss her, Oh what we give to have her back.

Devin is struggling with math AGAIN this year and he is struggling STILL with his listening skills at home. I keep saying to myself ďitís been tough on him; maybe I should give him a little room.Ē But I want his life to be much more than mine. Itís not that mine is not good, I just want his to be better.

Well thatís it for now. I will try and update more often. Itís hard though I used to write about Mel and had so much to tell you all. I know I am not really sure to write about. I will do my best, if you want to know about anything just let me know.

 

Angel Melodyís Daddy

Rob

 

Melly Girl,

My heart is aching I miss you so much. Momma and Devin are missing you too. But especially Momma, Let Momma know you are with her and that you are ok let her feel you in her heart.

Thank you stinker for all that have taught us in the past and continue to teach us today, the memories and gifts you left us and continue to give us.

I hope you are having a grand time with all your friends up there. I wish I could be apart of it. When I get there, after all the hugs and kisses, maybe you guys will let me play too.

Missing you baby more and more each day. Keep looking out for us. I love you very much! And miss you more that much more.

Daddy   

 

 

Update 3/3/06

Ok so where do I begin? Not really sure what I am going to write about. All my updates used to be about Mel and how her days were.  Our lives are pretty much still way out of whack. Our days still revolve around Mel only now its just thoughts about Mel, LOTS of thoughts. Mostly thoughts about missing her and wondering what she would look like or what she would be doing. So with all that said I want to give you a perspective of what I think Melís day would be like today, as an Angel from her point of view. Kind of weird I know but bear with me. You can tell me how crazy I am later.

 

 Hi peoples it Melody. I want to tell you the kind of things I do during the day way up here.

Well every day I get to meet a lot of new angels. There are so many, itís kind of like going to the stadium with my daddy except I know who they all are. We angels get to show everyone around heaven. Itís really fun. My favorite part is the shopping. We get to go wherever we want and get anything. Mommy, you should see all the shoes they have everything and they can make different stuff if want something different. Anyway after all the showing around and telling everyone how neat it is to be here I get to go see mommy, daddy and Devin. I know when theyíre awake because I can hear them and see them all the time. I get to be with all my family all the time. I can be with mommy and daddy at the same time.

Today when mommy was on her way into work she was thinking about me a lot. I was sitting right next to her in the front seat. I was looking right at her. I like to that I do that all the time. I am always with you mommy even when you think Iím not there I am. When you are crying and when you are laughing. Can you feel me touch you? Can you feel me kissing you all the time? If you sit really still and listen really close you can feel me and hear me. Sometimes I can make you laugh by reminding you about something silly I did when I was down there with you. Remember the other day when you and daddy were talking about the time I said about my junk in my trunk. That was me making you smile.

Daddy I ride to work with you all everyday. I especially like to ride with you in the rain. Oh and Dad, that is me all the times you think about me. I donít know how he gets any work done as much as thinks about me. But I like it when he thinks about me. Daddy I love you. Itís ok to cry daddy and itís ok to miss me. I am always with you tickling your heart and making you smile. I love it when you talk to me I get to sit there and listen to you all the time.

Oh I have to tell you about all the kids. When you tell me about a special kid I go see them and sometimes I get to hold their hands, talk to them and even show them how to get to heaven. I get to tell them there mommies and daddies will be ok when they come to heaven. Most of the time they donít want to come right away but they get so tired they decide to come anyways. And you were right daddy they are lots of kids up here you should have seen how many were here just waiting for me. Some of them said that there mommies and daddyís told them to come and get me. I didnít even know who they were. Now we are all best friends.

Mommy and Daddy I love you and I am always with you, tell everybody I said I love them and I and Iíll keep sending them little messages.

 

Ok weird I know you should have been the one writing it. Itís been awhile since I update dated so IĎll try to fill you in.

The holidays were eventful for us. We did celebrate as much as possible. Halloween was a little tough. Seeing all the kids dressed up and having a good time remembering how much Mel loved to pick out her costume and get all that candy. Thanksgiving was good. Lots of food and family and we even managed to get in a desert trip. Christmas was pretty good. It was very difficult to do the shopping. Although we had a great time getting stuff for Devin. Deb was very reluctant to decorate the tree. She and Mel were the tree decorators in our house. Devin was the man helping Deb out and making a beautiful tree for us to share. As Deb was getting started with the decorating I told her not to worry that Mel would be right there with her. Just a few minutes later as I was moving some things off the counter I found a Post card from Mel to Bammom and Poppa from Disney dated Nov 2004. It said what a great time she was having. Of course I showed it to Deb and called my mom and dad. Devin had a great time opening all his gifts.

New Years was pretty much uneventful Mike, Cindy and the boys came over and at midnight we made a HUGE mess with a but load of poppers that Mike bought.

Since then things are pretty much ho hum around here, working and just trying to get along. Deb is back to work with a great family owned company called Quiet Cool Fans        (Dana Stevenson Electric) The entire staff is great and the family is awesome.

Devin is doing well in school his grades are coming although he is still struggling with his math but having fun just the same. We are trying to figure out what to do with him this summer. The last two sucked for him so we want him to have fun this summer.

We have had lots of Melody moments this last year. Butterfly spotting at just the right time, things found in the weirdest places. And many other things. Even others have dreams.

Ok for those of you who have not received a post card yet. There were over 400 cards mailed off with the address that were readable. If you did not get one itís not because we donít love you or did not appreciate you gift or donation it because your address couldnít be read. Thank you to everyone that has sent a gift, donation cards letters or just came by Mel web page. We love you all and thank God for bringing you into our lives. You still bring us much joy and happiness to our lives.

Since my last update there have been many children that have earned there wings, some we were very close to. I know the families that have lost a child recently havenít heard from us yet but please know that we care and that we love your children and your families. It has been very difficult to write you. Know that we are here and that we will be contacting you.

As for the rest of you ;-) we just need some time we havenít forgot about you or your emails and messages. We still check on all the kids and the web pages. Thank you so much for coming buy to see if we are still alive. We are alive and we do care about all of you very much.

Well I guess that about wraps it for now. If there is something you al want to know just send me an email and I will try and remember to put in the next update. I will be attempting to answer some of the emails that you sent.

Thank you so much for coming buy and checking up on us. Thank you for all the guest book entries emails, cards, letters and gifts. Thank you for all the prayers and good wishes. Until next time God Bless you all. You will never be forgotten.

Melodyís Daddy

Rob

Princess,

We love you and miss you so, so much. Our lives will never be the same again. I hope you and all the kids are having a great time. Please come and visit us when you get some spare time. Have you got a place picked out for us when we get there? We canít wait for that day to come but I guess well have to. Until that day you will never be forgotten. You are loved and missed by so many people it amazes me. We love and Miss you like few can imagine. See you in our dreams Melly.

Daddy 

 

 

Update 4/20/06

I am missing Mel a lot today, ok everyday but today more for some reason. No bad thoughts, just wondering what she is doing and who she is with. WOW we miss her so much!

Easter was fun we went to the desert with some friends and had a good time. (Even if it was WINDY). We made a full Easter dinner on Sat. night and the kids got hunt Easter eggs on Sunday morning. I cooked a 15 pound turkey on the grill. I wasnít really sure how it was going to turn out but not bad for a first time. Not sure if Deb enjoyed the desert as much as Devin and I but I think she made the best of it.

Devin is doing pretty well. I still wonder if I am too hard on him sometimes, but I only want him to do well. He is STILL struggling with his math but doing well in everything else. Desert season was a flop for us this year my new Honda ATV is broken and Honda is going to buy it back.

Not to sure what the summer is going to bring. Last year we had memories of our April trip. We are going to find a summer type camp for Devin this year. You know one of those camp all day come home at night maybe a few sleep over nights. I sure hope we can find something fun for him. Maybe we will even get in a few camping trips or river trips. (Need to watch the gas prices)

Life in general is good and Deb and I are doing great. Deb really likes her new job and seems to get by well. We really need to start doing more things as a family it seems like we are always doing wanting to or actually doing separate things. Right before Melodyís DX we were really trying hard to do more as a family and nowÖ.. well its just not the same I guess.

Thank you for coming by and checking up on us. Leave us a message in the guest book to let us know you stopped by (BethAnn). Thanks to all of you that have left messages they mean the world to us. Please pray for all the families with sick children and for all the families with out the beautiful babies tonight.

God Bless you all

Melodyís Daddy

Rob

 

Princess

We miss you and Love you so, so much! Please come and visit us when you get a chance, I can only imagine how busy you are. Tell all the kids we said hello and tell them the mommies, daddies and the rest of the families are missing them terribly. We cant wait to be with you some day and start up where we left off. I still have your stuffed Easter bunny and sleep with every night. Even when we are not at home he comes with us. See when the time is right baby girl.

 

Daddy           

 

Update 8/16/2006

What an incredible trip we had. We participated in the inaugural DPG Conference in Las Vegas. This event is for parents, grandparents, and siblings of children that have fought the DPG monster. The event was the idea of Cameronís mommy, Carla Brooks. With the help of Cameronís Aunt Toni and others, this event was just what we needed.

There were two speakers at the conference, Tom Zuba, and Tim Hayden.  Tomís story is incredible, sad and inspirational all at the same time.  He spoke of grief and its meaning, mourning and ďgoing publicĒ with your grief, denial, what it is and why it is there. If you ever get an opportunity to hear Tom speak, I urge you to jump at the chance.  His website is TomZuba.com.   

Tim Hayden set up a foundation to help other families in memory of his son Jeffrey, who fought the DPG monster. Tim shared his knowledge of creating and operating your own non-profit foundation, the differences of public and private foundations, and some of the rules you MUST follow. Tim also spoke of a great tool for other families that will be fighting the same battle that we have all been through. The JTH Foundation will be introducing TumorTracker in just a few months. TumorTracker will be a place for parents and caregivers to input information about their journey.  It is a valuable resource for families to learn all of the things we had to find out on our own, things the doctor never told us, either because they didnít know or didnít want to tell us. All personal information such as names, address, phone numbers will be kept private, however the medical information such as treatments, effectiveness, and comfort level will be available for others to see. Caregivers will then be able to print out reports and see what is working and what is not. Keep an eye on JTHF.org for TumorTracker. I wish it had been around 2 Ĺ years ago. At the time we were on our own, in shock, searching for answers and treatments. In the future, parents will be able to upload their childís MRI and doctorís reports to a server and get second opinions. Tim also started a Family Link Network that is right now up and running. You can add your childís website link to a list of either Warriors or Angels. Itís a way for families to be connected and share information. Those of us who have been on this journey found most of our information about DPGs was from other families. I can not say enough about the JTH Foundation

As for the rest of the conference, it was wonderful. We spent time with a dozen other families, all have the questions and, have the feelings. I wish it had all been under different circumstances.

What a great idea this was! Thank you again to Carla and Aunt Toni for putting it together and to Tim Hayden and Tom Zuba. We went away with our minds and hearts full. We are already looking forward to attending next year.

And now I am sure you ready to hear about the family, or maybe not. We are doingÖhmmm ok I guess. Deb and I are having some difficult times. We are ready for Devin to go back to school (isnít that horrible). The summer has been pretty busy. We didnít find a ďcampĒ for Devin to go to but I did try really hard do things with him as often a possible. Deb has been working a lot and we havenít had much time to spend together. As for life in general we continue to miss Mel and her presence in our lives. Each day is a struggle and not a day passes with out thinking of her. One and half years have almost passed and it is still very hard. The tears still flow, the heart still aches, and the yearning of wanting to have our little princess back is still there. Will it ever stop? No. Will it ever get any easier? Only time will tell. It seems like time moves so, so slow.

I guess thatís it for now. Maybe it wonít be so long between updates next time. It is so hard to write anymore, there used to be much more to tell.

Thank you for still checking in on us, God Bless you all.

Melodyís Daddy

Rob

 

OH Princess,

We miss you with our entire being. You are our every breath, our every blink of our eyes, our every step. I hope you know just how much we love you and miss you. I often wonder what you are doing and who you are with. Someday, when we are together again, you can tell me all about your time away from us. Until then we will wonder and dream about you. Princess we love you so much and miss you even more. Until that day baby, keep watching over us and give a message every now and then, like you did today with bunny.

Love you and Miss you

Daddy    

 

Update  10/02/06

I can you this much September has been one interesting month. This will most likely be a short update but, I just wanted to fill you in.

Letís see Devin started the 7th grade, we emptied my brotherís storage unit, Devin turned 12, and we made our first Desert trip of the season. Well remember I told you last update I told you Deb and I were having some difficulties? Things had been improving however Deb started a new kind of Medication (Abilify) about 3 or four weeks ago and things started to go down hell from there. Deb stopped taking the Med but things just kept getting worse.  Her anxiety is so bad that she has had to be hospitalized. So far no one has been able to figure out what the hell is going on but I think I have in the right place this time. There is so much more I could tell you but right now I donít think I should or even can. Letís just say this past week has been hell for all of us. I had to tell Deb and the hospital staff that I could not take her home; I told them I couldnít do anything for her. Any way long story short someone finally said they magic word ďLetís see if we can FIX this!Ē I just spoke with Deb this morning and she sounded pretty good. I will be seeing her tonight.

Devin is doing great in school this year even in Math. Itís like a complete 360 for him Aís and Bís on his weekly tests. WoooHOOO.

I guess you could say things are starting to settle down a bit the last couple of days. It is just Devin and I in the house right now. Feeling lonely without Deb around but hopefully they get this at least under control for her and she will be home soon. I love my wife and kids more then you will ever know and it hurts to see them sick. I would do anything for them. We miss the stinkerbell so, so much!

I hope all is well with you. The holidays are quickly approaching, am looking forward to the weather to cool down. I hope God Blesses you and your families. Please keep us in your prayers.

Melodyís Daddy

Rob

 

Princess,

I can only imagine what you have been up to. I bet you are having the most wonderful time. We miss you so much and looking forward to the day we are all together again. Tell all the kids I say hello and that there Mommies and Daddies miss them. I love you baby. I see you my dreams.

 

Daddy  

 

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This site was last updated 05/23/07