Thursday, April 17, 2003 4:38 PM CDT
Luke writing in today...Yesterday was kind of a rough day. Nothing major really, Nathan was just tired and cranky and I may have been near the end of my rope. We didn't have Nathan at the clinic yesterday, but we did have to take him to the outpatient center to get injected with a radioactive isotope that gets picked up on the study he had today (but that is getting a little bit ahead). When getting the isotope, he had to have an IV placed because the isotope could have clogged up the tubes on his broviak. He was great about it and rather cheery the whole time there. He did start to complain about some mouth pain which likely means he is developing mouth sores. This is common when his immune system is down as it still is and can be problematic as those sores can become good sources for infection. So far they don't seem too bad. He also started complaining about some hip and leg pain again yesterday which is disappointing because we were hoping to be done with that.
Today he was in for an MIBG scan. This is a nuclear medicine exam and the purpose in Nathan's case is basically twofold. The study is very good at picking up neuroblastoma so it is a good way to see where exactly in his body and bones the cancer exists. It is possible we will learn something new from the test, but it is more likely that it is a good baselining tool to know where to look for cancer as he responds to treatment and the doctors attempt to determine when/if the treatments have gotten rid of the cancer. Nathan was sedated for the scan. We insisted on this. He has freaked in the past during tests that things moved closely over him. He was very groggy after the sedation which made for a fun trip to the clinic after the scan. He had blood drawn and got his daily neupogen dose. His counts are still very low (.1 WBC). His platelets were okay but his red blood cells were creeping pretty low again, so we will be in for another transfusion tomorrow morning.
It is very had to see him suffer and he is pretty beat up right now. Since we took him to the hospital on March 31 we have been in the hospital, at the clinic, or at the outpatient center for the hospital every day but saturday and sunday of last weekend. The chemo didn't make him all that ill, but now as his system is crashing he is feeling and looking pretty low. Now it is hurting him to eat and drink. We are looking forward to the upswing which will hopefully start soon.
As I write this Nathan is fussing, yelling, and in general being very rude. Through all of this though, he has let his sweet side shine through. Examples:
In the hospital several times after someone was in the room to take care of him he would say, "Oh, Mommy (or Daddy), the doctor/nurse/teacher make me feel better."
In the hospital one of the best nurses you could possibly imagine who was great at settling him into bed comfortably so he could sleep after his surgery kissed him on the head. He said, "Oh, Daddy. The nurse loves me."
In the middle of the night after chemo when he had a stomach bug and I was changing his sheets and diaper after laying him on the floor by the bed, "Daddy, you're the best. You're a big helper."
One morning after waking up and noticing his broviak while we were changing his morning diaper, "Julia doesn't have tubes."
He is going through a lot, but he reminds us frequently that he is still our sweet, wonderful boy.
I'm not sure what next week brings us. Tomorrow is another transfusion and we hope that his fever (he has been running a minor temp) doesn't spike. If it hits 101.5 while he is neutropenic it will buy us 3 days in the hospital. I'm hoping next week isn't 5 days in the clinic or hospital, but we shall see.
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