April 13, 2003

  Sunday, April 13, 2003 10:42 AM CDT

 

This is the first journal entry and so I will attempt to catch us to today.

 

On March 31 we took Nathan to the pediatrician to follow up several weeks of intermittant fever and 3 days of limping and refusing to walk. He referred us to a pediatric orthopedist suspecting a hip infection. She sent us to the hospital for an MRI of Nate's hip. The MRI showed some shadows on both hips. On April first he had a bone scan which showed a tumor on his kidney. The orthopedist told us it was most likely neuroblastoma.

 

On April 3 Nathan underwent surgery to have a Broviak placed (tube in his chest to deliver IV meds and make blood draws). He also has some of his tumor resected for biopsy and bone marrow taken from both hips.

 

April 4 Nathan had a blood transfusion since he was anemic.

 

On April 5 we were told the bone marrow was "heavily involved" which we were expecting. We were also told that the tumor was so necrotic (dead) that the biopsy was going to be very difficult.

 

On April 6 Nathan got to come home from the hospital. He was initially fearful or returning home because he thought he would hurt again at home (he was having bone pain from the affected bone) Once he got in the car and got home he was very happy.

 

April 7 Nathan went to the clinic for the first time and had blood drawn.

 

April 8 Nathan had a blood transfusion. We were still waiting for test results to confirm the neuroblastoma diagnosis since the tumor sample was no good. We finally got the diagnosis that afternoon from the tumor in the bone marrow.

 

April 9 was the first day of chemo. Nathan got the room with a bed and so napped some which was a good thing. We had some good news when the test results of his n-myc amplification came back at 1 which was essantially non-amplified. This is a prognostic indicator that helped to increase his chances for recovery. His age (over 1) and stage (stage IV metasticized neuroblastoma) and more critical factors, but at least he doesn't have the n-myc amplification as well. That evening Nathan was sick all night but we actually think it was the stomach bug his sister Julia had.

 

April 10 and 11 were two more days of chemo. Nathan handled the chemo fairly well. He had some tantrums (since he is 2 after all) but was very good.

 

April 12 was our first day home since the hospital that we didn't have to go to the clinic. We had to bribe Nathan to walk - the doctors tell us his bone pain should be gone but he was too afraid to walk. AFter we convinced him to walk he walked around some - that was good to see. I also took Nathan to get his hair buzzed to make the impending hair loss less traumatic for him and also for me!

 

Today is April 13. Nathan is refusing to walk again today. We will try to bribe him to walk later. He is asking for a nap so that is next on the agenda. Tomorrow he will gop to the clinic for his first dose of Nupigen - which will help to stimulate his bone marrow to produce white blood cells.