The Story

05/19/09

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It is a shock to find out that a child we love is ill and a band-aid canít make it better. How helpless we feel. That one day Melody is playing on the sidewalk in front of her house, camping with her family and going to school with her friends and the next day we have this burden to carry.

The week before Melody was diagnosed, we saw some problems, but she had a cold and we thought that she just didnít feel good. Also, Melody had recently crashed heads with the dog and got a black eye. She would not be feeling good and then later be perfectly normal. She went to school through Thursday the week before diagnosis. On Friday, I thought I had better take her in to make sure she didnít have an ear or sinus infection. Robbieís work had just changed insurance companies, and instead of giving us the doctors we had requested on our paperwork, gave us different ones. When trying to get Melody and appointment, I found out the doctor she was assigned to was for senior citizens. They refused to see her and sent us to urgent care. The urgent care doctor told me it was just a cold, a virus. I took his word for it. That weekend we stayed at Campland On the Bay in San Diego and went to Sea World. She was not well, but I thought she was just not feeling good still from the cold. Sunday night some of her symptoms we thought were caused by the cold seemed worse but she didnít seem to have the cold anymore. I took her to a different doctor on Monday. We had to wait until about 7pm when this doctorís office started taking in walk-in appointments. Melodyís blood pressure was very high. After the doctor examined her and listened to my concerns she asked if Mel had a head injury. I told her about the crash with the dog. The doctor thought Mel may have a cranial bleed, caused by the crash with the dog. The plan was to get the insurance co. to approve an MRI and have that done later in the week. We called Daddy (hysterical) and he came to get us. He called the doctorís office and asked if they think her brain may be bleeding, shouldnít we go to an ER? He talked to a different doctor than the one we had seen earlier. This doctor said he would like to examine Melody himself and asked us to come back in the morning. When we went back, this doctor was very concerned and said that if he hadnít known about the run in with the dog, he would think tumor. He sent us to Childrenís Hospital with a list of his findings.

When we got to Childrenís, we didnít have to wait very long. They took Melody to an observation unit with three beds in it. She was given an IV, examined and sent off for a cat scan. The kid next to us had been sent for a cat scan just before Melody and within a half hour of returning to his observation bed, the doctor told his family his scan was clear and he could go home. About an hour after Melodyís scan, I asked the nurse if they had received the results yet. She said no. A Child-Life specialist started hanging around with us and talking and playing with Melody. I asked a few more times if her scan results were in and they were not. Finally, a couple of hours after the scan we were told we needed to move to a private ER room, that the bed Mel was in was needed for someone else. Robbie and I just looked at each other scared, we knew something was up. After moving, the Child-Life specialist told us that the doctor and a social worker needed to speak with us in a conference room. She stayed with Melody. We were scared to death thinking they were going to tell us she needed brain surgery for a cranial bleed. It was worse. The doctor told us that there was a mass on Melodyís brainstem. I canít explain how we felt. There are no words to really describe it. Itís a feeling so awful you canít imagine what itís like unless youíre in the situation. Melody was admitted to the hospital. We were in shock; I donít think we thought the word cancer until we saw the sign that said we were in the Oncology unit. We would have to wait until morning to talk to the Pediatric Oncologists. The next morning we were again taken to a conference room and told that Melody has a brainstem glioma, surgery is not an option due to the location of the tumor, the tumor had become part the brainstem and that she has a 10% chance of long term survival. That was March 23rd, 2004. From that day forward, forever, our lives will never, ever be the same.

There is quite a bit on the web surrounding the disease and much of it isnít positive. However we Schleigh family members are sure that Melody can be in the 10% referred to as survivors of the disease. We believe in miracles and we know they happen every day. With your prayers and positive thoughts we will overcome this bump in the road called life.

 

 

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