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 couldn’t 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.
Mel’s 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 it’s 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!
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 Children’s Hospital at 7am to check in and get Mel’s paper work
all done and then we waited about ½ 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 Mel’s 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 home….. 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. Let’s see she got a few
karaoke CD’s, a Hello Kitty work center, and are you ready for this a Hello
Kitty refrigerator. What a stinker!
We haven’t done much since getting home Mel isn’t right
today I hope it’s because of the anesthetic. Her hand and foot still aren’t
right and she complained of a headache this evening. We are hoping the
headache was because she was hungry she hasn’t eaten much today. As a matter
of fact Deb is out at Mac Donald’s 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.
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 Children’s. Praying for a call with good news; afraid
to get a call with bad news.
Please continue to pray for Melody’s earthly healing.
I can’t bear the thought of not having her. Thank you.
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 chemo’s 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 don’t know if this will make any sense but it wasn’t
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 don’t 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 can’t 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 Jesus’ 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 it’s 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 cry….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.
It’s 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 doesn’t 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 don’t 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 Mel’s 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 princess’s
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!
It’s been a pretty good day. Mel wasn’t necessarily in
a good mood today but not necessarily in a bad mood either. Just kind of
quite toady. She didn’t 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. I’m 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, it’s supposed to be a little warmer storm. Don’t let my “ANOTHER”
fool you we don’t 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 O’clock this morning my brain isn’t 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
don’t think we will ever catch up. I’m talking thousands behind you all
amaze me. Please continue to keep the prayers for Mel’s miracle, strength
for our family and guest book entries coming.
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 it’s a short update tonight. MAYBE I’ll get
in to things more tomorrow.
It’s 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 ;-) )
Let’s 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
weren’t for the spell check on this word processor you wouldn’t 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 doesn’t 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 that’s about it for tonight. I really can’t 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.
Deb’s 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 Mel’s not happy,
and when Mel’s 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.
First of all Happy Anniversary Aunt Sissy and Uncle
Browne. Thank you for being there for us! We would be lost with out you.
Mel’s 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 didn’t 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 “It’s not fair!” “Why does this have to happen to her?” Well first
of all, why does it have to be any of these kids? This shouldn’t be
happening to any of our children, our children’s, 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 it’s 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. It’s not fair. There are
people out there who are killing there children because they can’t handle
it, or because they don’t want an ex to have them, or some other stupid
ridiculous bull shit reason. Why doesn’t it happen to them? Because it
didn’t 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!
Mel’s 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.
It’s day six for rain here sunny So. Cal. I had to use
my sin glasses for the first time in about 2 week’s fir about an hour. It’s
supposed to let up by morning. With that said Deb, Mel, and Bammom are going
to attempt a Target. That’s 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 friends’ web pages and drop them an encouraging
message in there GB. Thank you for all that you do for us.
Mel had a good day today giggling and laughing and just
keeping busy. She received a big gift from someone today. (I won’t 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 DVD’s. She even spent some of her medicine money at
target today and bought a few new DVD’s.
Mel also worked on some of her math and word puzzles.
That’s 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
company’s 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
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 Mel’s 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 wasn’t 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 “Don’t even think about it Devin!” I am sure that after
the newness wares off it she will share it with him just fine. But then
again…….
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.
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.
Well it’s been ok around our house. Minus a few
episodes of fighting to get Mel in the recliner to put her feet up.
Let’s 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 Mel’s 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 don’t 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 don’t get excited there aren’t 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.
It’s 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. Let’s 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 cousin’s 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! Mel’s 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 Melody’s 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.
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 so….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 self’s!
It was a beautiful summer like day here in Southern
California. Unfortunately Mel didn’t get outside to enjoy it. She just hung
around in the house. Mel worked on her word puzzles ALL DAY LONG. That’s it
that’s 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 doesn’t 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. That’s about
the only change we have noticed as of right now.
Well I guess that’s 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. I’ll 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
Well Mel’s day was pretty much the same as yesterday. I
didn’t 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 hasn’t spent any time in the recliner except for right after she woke
up. Oh and course she did watch cartoons.
As for Deb….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 don’t
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 “What do think is going on
with that hand?” She said “I don’t know.” But I could tell that she has an
idea. I then asked her “Do you have any questions for me? Anything you want
to talk about?” So in true Melody form she said “Where do babies come from?”
Now can you guess what I did next? I’ll bet you think I went and got Mommy.
Nope. I said “Mommy’s tummies.” She said “I know that Daddy.” I said “When
Mommy’s and Daddy’s love each other so much that they want to share it with
babies.” I think that went pretty good.
I wish I could make this all go away. That’s 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 don’t 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.
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.
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 won’t 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
Melody’s 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!
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, that’s 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 it’s 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 haven’t 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.
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. That’s 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, Cheyenne’s 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 don’t 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 Melody’s body, her soul will still be alive.
Touching our lives, and many, many others. More lives then we can ever
imagine. It doesn’t 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 “suck”. 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.
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
Melody’s 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. Don’t forget Melody’s 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 Melody’s 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.
Sorry about last nights update, missing words,
misspellings etc… I was half asleep when I wrote it. I read it this morning
and, DOH!
Tonight’s 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 didn’t get out of there until 2:30 and back to the house around
4:00 ARGG! Mel’s counts are good. We will start a new kind of chemo, well
new to Mel. It’s 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. Mel’s 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
haven’t been able to go by all our friends’ 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 Melody’s miracle. If is not to be please pray for her
comfort and for here peace of heart and mind.
Well let’s see. It’s been a rainy day here, I am not
complaining however. We sure do need it.
Not much to say about the stinker’s day. Crossword
puzzles, TV and a movie. She did sit in the recliner more today. Now that is
a good thing! She just isn’t 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 Lowe’s 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 don’t have anything special tonight.
The only thing I can think of is, Thank You! Thank You very, very much.
My little stinker had pretty good day. Again she didn’t
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 hasn’t 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
“Yea tell him he is Uncle Stinky!” I will have to get into that another
time. I mean I don’t 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 sister’s 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 didn’t 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 writer’s cramp.
Good night friends, old and new alike. God bless each
and every one of you.
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. But….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
Mel’s face is starting to…I will say fall. I haven’t 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
don’t 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.
I did it again didn’t I? Mel is doing fine I was just
very tired. I will write more tonight. Deb is also doing ok. I wasn’t home
for most of the day yesterday. As far as I can tell it was a good day. The
ladies didn’t go to bed until after 1 in the morning.
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. “We will just try to make them
comfortable until the time comes.” That’s it? That’s 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 it’s because there is no money in it for them!
That’s what it’s all about right! Like if a car doesn’t 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 “It’s not there fault,
they are trying there hardest.” 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.
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 isn’t anything out there to
make you better? Well let me tell you it sucks with a capitol “S”. Now we
know she must have some idea what is happening. She did kinda. To say the
least she is ok with it. That’s 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.
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. It’s usually the long ones that I have no idea what to
say. Kind of funny isn’t 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 don’t 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 haven’t been by any of our caringbridge friends
lately. And I haven’t asked you to pray for them either. There is not a day
that goes by that I don’t think of our friends and there families, or a day
that I don’t ask Jesus to heal them. I see all of you parents come by and
leave a message in Mel’s 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
friend’s 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 “Do you know how much I Love you?”
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 don’t 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.
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
Mommy’s 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 “I think you stink!”
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 Savannah’s 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 isn’t sure if
they want to take on Melody’s case. HUH? Yea, that’s what I said! I guess
that they don’t handle children “Very often” and they are “Uncomfortable”
with the severity of the Melody’s 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 Schleigh’s. What a bunch of insensitive assholes! And don’t
think I won’t 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
Melody’s 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.
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 hasn’t 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 didn’t 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 hasn’t 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.
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 hasn’t 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 “I love you, I love
you, you are the best Mommy in the world.” 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 didn’t 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 “not be here” 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 I’ll 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 I’m 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.
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.
I’ll 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 “What!”
Thank you for coming by to check on my little princess.
Please continue to pray for Mel as well as for us. Good night.
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 couldn’t 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.
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 Americas’ 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!
Well the little stinker woke up last night for about ½
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 hasn’t 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 doesn’t 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.
Shortly after the last update Mel went back to “Sleep”
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 doesn’t 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.
Mel continues to sleep waking up every now and then
asking oh, I mean telling “check what’s on”. 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.
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. That’s sort of
how it happened. Mel was out playing with there boys and that’s 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.
That’s it for now I will update again tomorrow around
the same times as today. Thank you all, Good night and God Bless
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.
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. It’s 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 ;-) )
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 that’s 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 don’t 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.
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 don’t 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 couldn’t have asked for a better day.
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 that’s a pretty big deal around here since she hadn’t 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
it’s 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.
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
hasn’t 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. It’s a
pretty busy house tonight and we are working very hard to get Mel’s temp
down. She is giggling and laughing a bit tonight and that has got to
somewhat good.
At one point today Mel’s 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.
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 Mel’s eyes are open its like she is not
there. There are times when you can see her there, and that’s when we tell
her “MEL? I LOVE YOU!” and sometimes we get an “I love you to!” Of course
that’s 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 “asleep” and if you ask her “yes” or “no” 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 “Beef! It’s what’s for dinner!” Thanks you
guys it was Mmmmm Good!
Well good night and thank you all, we are truly blessed
to have in our lives.
WOW! It’s almost tomorrow here my sleeping is all
screwed up. Up early and to bed late, ummm no early. What ever!
Let’s 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. It’s kind of
cute, in a chuckling kind of way.
Well Mel’s 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 “Dream world”
she is in and the “Awake world” 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 “Sleeping” but
when the music stopped she said “What happened?” we of course said “What
happened to what?” She said “The music” and we told her that it was on TV
and it was over now. “OH!” that’s 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 “FOG!”
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!
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 “dream state” 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 isn’t that great! She even offered her Uncle Bill some cookies
today, cookies that we don’t even have. She asked mommy if she and Keith
(Leslie’s grandson) could have some more fruit roll ups. Keith hasn’t 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.
It’s 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 “Ahhh the worst part.” My reply was “No, the worst is yet to come!”
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.
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 “dream state” 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 it’s not going to happen. So if it was
important send it off again. I sure do hate when that happens. O well we
don’t put anything that can’t be lost on this darn thing anyway. Ok you have
to check out
Julianna’s site. I remember a message her dad put in Mel’s 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 you’re
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.
It pretty quite around here tonight, Deb’s Auntie went
home this morning and her sister and nieces leave tomorrow so they went down
to San Diego with Grammy that way they don’t have to get up so early. And
Devin is at a friend’s 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 didn’t get to sleep
until 3:15 that’s when Mel’s breathing settled down. Even then it was hard
to get to sleep.
Mel’s 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.
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 Mel’s 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 it’s like it has a double beat. What I
was able to count I would have to guess it in the 160 or better range.
That’s 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 – 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
Melody’s 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.
Mel’s 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 Mel’s BP is 158 over85 and her
pulse is 153. The nurse said she heard some fluid in Mel’s 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 very… well they are short sleeps. I am not
sure what else to tell you there is much to tell right now. Waiting… 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.
Melody’s 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 Melody’s
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.
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 “I love you too”
when we tell her “I love you” It’s good to hear.
Good night, God Bless and thank you for everything.
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) “What are you doing awake
already?” and she started to cry a little. I asked her what was wrong and
she said loud and clear “YOU SCARED ME!” OOPS my bad. I rubbed her hands and
face and told her “I am sorry, I love you.” And I got one back “I love you
to.” 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.
It’s not
yesterday’s regrets,
nor
tomorrow’s 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.
Eleven months ago today! That’s how long it’s been
eleven months. I didn’t 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
doesn’t seem fair! Not a day that goes by that I don’t 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.
Rollercoaster’s I don’t 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.
That’s it! That’s 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.
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 hasn’t 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 “No, This is good!” How can it not be good? No more
suffering! No more sickness! No more tumor! We keep telling her “It’s ok to
go. Don’t be afraid or scared. We will be ok and you will have so much fun!
You won’t be sick anymore, you can run and play and be a kid again!” 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 “Normal”.
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 can’t believe this is happening to Mel or to us.
Please don’t 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
didn’t 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 can’t seem to find them. Just know that I do make the time
to check on you all.
It was a very long and trying night! Deb and I were up
all night and didn’t 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 Mel’s 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 140’s. 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 can’t 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? Don’t answer those I was just thinking out loud.
Mel’s 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
Cheyenne’s 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 women’s
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 Fiveash’s 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
Rachel’s site and there will be a link to the site they are on.
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
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.
Rayanne’s 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.
I am sorry but I don’t 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 can’t 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 that’s 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 can’t 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.
Well if you haven’t 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.
Mel’s 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
Mathew’s 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 “unique visitors” that visited Mel’s
site 71,788 times that’s 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, that’s 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
Matthew’s 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 that’s
up to you. Help me find a cure for this monster! I told Mel that is what
I would do that’s 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.
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 Mel’s lungs, her BP was 102 over 62 and her pulse is about the same
in the 160’s. 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 but…
that’s how a feel. It feels rotten to say it and even worse to feel it.
Mel hasn’t changed a bit from yesterday. She is still
in that “coma state” 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.
Don’t 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
Matthew’s 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
Special’s 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 haven’t 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.
We are in the process of fighting back a high fever
tonight. Mel’s BP today is 82 over 60 in pulse is in the 180’s. 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 Deb’s 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
This is Melody’s 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 Mel’s 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. Mel’s 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 Melody’s 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 Melody’s 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.
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 don’t worry…they will. Rob said when he can he will be
back to his updates. Check in from time to time and check up on them.
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 Mel’s 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 Melody’s 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 Mel’s 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 Ann’s 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 child’s 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.
Well, I’m not really sure where to start. It’s been a
long week and there is emptiness in us that can never be filled. I can’t
even explain the feeling; it’s 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, it’s 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 it’s 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 don’t 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, Audrey’s Umbrella, and Tumbleweed. (Just to name a few).
As for the last few hours with Mel, it was…well 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. Melody’s last words to Deb and I (at separate times) were “I love
you too.”
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 Mel’s 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,
that’s 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. I‘ll 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. It’s funny. it will still never be enough to just
say thank you, but right now that’s 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.
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 that’s 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 I’m 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 Matthew’s 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 it’s cool to see how some of the envelopes are
addresses some say “Melody’s Miles” and some say “Miracle Miles”, 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 don’t 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 Mel’s 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 Mel’s 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 don’t 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.
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.
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 don’t 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
what’s going on at that moment. I tell her how much I miss her, how much I
love her and how I can’t 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 Mel’s passing the
1st week, the first Easter, and we are coming up on the first
month. Easter was just ok; it just wasn’t the same, more like another day
just with lots of candy. The biggest first for us will be in May, Mel’s 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
can’t really explain it; the emptiness gets greater and the pain worse.
I am not a dreamer. When I say dreamer I don’t 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 couldn’t 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
“you have to check out these new huge towels that mama found at Target.” I
reached down to grab a towel and couldn’t 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 “Is she still here?” She said
“no, she was gone as soon as I opened the front door.” Then I was awake!
Although I didn’t see it in my dream (I don’t 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 “they
couldn’t talk because they were too slow.”
(This is Debbie, Melody’s mom. I’m 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 didn’t 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 wasn’t a dream, it was a
visit. I’m so happy to know that she is happy and healed and I’m jealous
that she didn’t come to me first!)
Well that’s it for now. I guess I just had to share
that with you. Oh, before I go an update on the fundraising for Matthew’s
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.
Melody’s 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 “NO KISSING!” 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.
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.
We didn’t 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 Donna’s 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.
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 wasn’t 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 doesn’t know). It was her Brother Michael’s
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. It’s 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 don’t 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 Michael’s 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.
We left Roy and Donna’s mid morning to go to Lisa’s. We
drove through some of the most beautiful county we have ever seen.
On the way to Lisa’s we stopped of Dallas to visit with
Carol, Sydney’s 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 Lisa’s in the late evening but for whatever reason weather,
distance or just stupidity on my part we didn’t get in until midnight.
Arggggg, talk about a long day. We arrived at the lake right down the street
for Lisa’s 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 Donna’s. 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.
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 Lisa’s as they were at Roy and Donna’s. 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 don’t 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
Lowe’s to pick up some things to hook up Lisa and Cassie’s 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 Lisa’s house in the dark, with the
bugs and by himself about 80’ 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 hadn’t
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.
We went to Lisa’s again for breakfast. Devin and Cassie played some games
while Deb, Lisa and I talked some more. Cassie’s 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 don’t hold anything back and
for that I admire you. Jerry is a good man and it’s 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.
It was a good drive to Dawn’s it took about five hours and was again
uneventful except for some wind.
We arrived at Dawn’s 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 Donna’s? 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, “I shall call him Squishy number two.” “Can we take him home?”
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.
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
Lowe’s 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 didn’t 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
it’s such as special occasion) and right now the girls and Devin are in the
“Toy” room playing games and watching TV.
Deb is going through all of Dawn’s 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
I promise an update on the last part of our trip soon.
It’s 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 “And 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!” Ok so we don’t 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
Emerald’s page and all those same thoughts were in Kimberly’s update.
She knows, as do too many other parents know what we think and feel.
Tuesday the 10th of May will have been Mel’s
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
kids’ 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.
Let’s see what are we up to for Matthew’s Miles ok
since we have been gone you have sent $1056.63 OH! And I cant forget the
$40.00 I won playing Texas Hold’em 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 can’t 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 “I love you to” 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
don’t always get things like that right away.
We love you stinker very much! We miss you more than
anyone can ever imagine!
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, “Popular”.
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 can’t 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.
Ok, OK, so it’s been awhile since I have done an
update. I am sorry. It’s 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 don’t 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. It’s 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 friend’s 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 don’t see the pain and the
anguish that we share as parents and as a brother. People who don’t know us
would never know what just happened unless we told them, and we don’t go
around announcing it.
We have done a few things in memory of Mel since my
last update. We did a walk with Children’s Hospital during the Celebration
of Champions, The balloon release for her birthday and, a Celebration of
Life at Children’s 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 it’s 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 can’t 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
wasn’t in the past, but it’s 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 Mel’s birthday.
As for the fundraising effort well I haven’t 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. Don’t think that I don’t stop by. I do, as
often as possible. My days are a little long: 3am to sometimes 10pm. That’s
awake time not at work time, what do think, I’m crazy! Thank you to those
who have left messages in Mel’s guestbook they mean the world to us. Thank
you also to those who have visited Mel’s page and haven’t left a message you
to mean the world to us.
No we haven’t forgotten those of you in our lives that
we said we want to get together with and haven’t. 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 Mel’s
ourmelody.net site and you can link to it since it’s 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,
that’s 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,
Hanna’s 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 Hanna’s web page.
I’m thinking of
having a balloon release on August 9th. She died at 5:15 that morning. Since
that’s 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 I’m 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. I’m 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
Matthew’s 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.
Melody’s 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 that’s 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.
I actually sat down yesterday to write an update
wondering what I was going say. I was going to tell you all about Devin’s
camp, the Celebration of Champions, and the Celebration of Life, all that
for Mel
I am sorry I haven’t updated in a long while. Devin’s
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 ½ 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 aren’t 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 Melody’s 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
Bill’s 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.
Ok, ok, ok. Sorry for the llllllloooooooonnnnngggggggg
time span between updates. It’s 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
Matthew’s 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 Devin’s summer wasn’t one of the best he has
ever had. We just didn’t 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 Children’s 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 don’t 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. It’s 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. Waiting…waiting 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
Matthew’s Miles, maybe even before but don’t count on that. Remember
there is still plenty of time to donate to
Matthew’s Miles if you haven’t already. Please remember all our friends
and family’s 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 can’t 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.
Let’s just say that Matthew’s Miles was great,
successful, and WET! Yes, that’s right, we got WET, very, very wet. But
worth every drop of water!
Deb’s back was bugging her so she opted to follow
around in the car and take pictures. I walked with Angel Rachel’s Mommy and
Daddy, Jeanne and Steve, and let’s not forget Rachel’s 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 Passarella’s 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 Matthew’s 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
(who’s 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 haven’t 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, it’s about Mel. She is in
a depressed mode that I haven’t 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 haven’t 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
“it’s been tough on him; maybe I should give him a little room.” But I want
his life to be much more than mine. It’s not that mine is not good, I just
want his to be better.
Well that’s it for now. I will try and update more
often. It’s 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 Melody’s 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.
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 Mel’s 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, it’s 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. It’s
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 they’re 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 I’m 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 don’t 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.
It’s ok to cry daddy and it’s 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 don’t 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 daddy’s told them to come and get me. I
didn’t 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 I’ll keep sending them little
messages.
Ok weird I know you should have been the one writing
it. It’s been awhile since I update dated so I‘ll 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 it’s not because we don’t love you or did
not appreciate you gift or donation it because your address couldn’t 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 haven’t 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
haven’t 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.
Melody’s 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 can’t 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.
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 wasn’t 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 Melody’s DX we
were really trying hard to do more as a family and now….. 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
Melody’s 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.
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
Cameron’s mommy, Carla Brooks. With the help of
Cameron’s Aunt Toni and others, this event was just what we needed.
There were two speakers at the conference, Tom Zuba,
and Tim Hayden. Tom’s story is incredible, sad and inspirational all at the
same time. He spoke of grief and its meaning, mourning and “going public”
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 didn’t know or didn’t 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 ½ 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 child’s MRI and doctor’s
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 child’s website
link to a list of either Warriors or Angels. It’s 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 doing…hmmm ok I guess. Deb and I are having some
difficult times. We are ready for Devin to go back to school (isn’t that
horrible). The summer has been pretty busy. We didn’t find a “camp” 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 haven’t 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 that’s it for now. Maybe it won’t 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.
Melody’s 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.
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.
Let’s see Devin started the 7th grade, we
emptied my brother’s 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 don’t think I should or even can.
Let’s 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
couldn’t do anything for her. Any way long story short someone finally said
they magic word “Let’s see if we can FIX this!” 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.
It’s like a complete 360 for him A’s and B’s 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.
Melody’s 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.
