SD's September clinic day on the 12th (Friday) was a bit different from what we have come to expect. To give you an idea, here is a look at what a typical day at clinic looks like:
Check-in, vitals taken, port accessed, physical check-up. Then, if it's the top of a cycle, we wait to be called to the "road trip" to the sedation floor; generally the wait is 1 - 2 hours. If SD is the youngest (and so far he usually is), he gets his spinal tap done before the other kids. We wait for him to wake up after the 5-10 minute procedure. On spinal tap days, he is not allowed to eat or drink since midnight, so we bring food to help him wake up! Then we get wheeled back to our room to wait for the IV chemo. Once the chemo is made, it's a quick push into his line, he's deaccessed, then we leave. All this generally takes 4 - 4.5 hours total.
Last week followed that schedule until the nurse received SD's blood counts. Once again his red counts are dropping. This time they decided to do some extra blood tests and also requested a urinalysis. Because of the initial results of the urinalysis, we had some scary moments as the nurse requested a second sample and tried to explain some possible reasons for such results (both sugar and ketones present, which apparently is Not Good, especially since his blood sugar was low when he came in that morning).
The extra blood test was run to make sure that he doesn't have antibodies attacking his own red blood cells. Praise God, he does not! They said it looks like his bones are making his blood quickly and that his liver is not breaking it down properly. I don't really understand all this, but I know it isn't as serious as the first thing they were worried about. But obviously, no one wants the current problem to continue either. They think his medication called Dapsone may be to blame for the fluctuations in his red counts, so are taking him off it completely. He has been switched back to the IV Pentamadine he used to get, which he'll get once a month (every time he's at clinic). This will lengthen our clinic days a bit since it takes about 1.5 hours to administer, but we are hopeful that it will stabilize this blood issue.
As we were just about to head out the door for the day, a nurse came rushing back to tell us they need a second urine sample and also more blood. SD had already been deaccessed, so he ended up getting a finger prick. Amazingly, both samples tested fine, and we were free to go. After more than seven (sometimes anxious) hours in the hospital today, the level of relief and thankfulness as we walked through the clinic doors was pretty intense!
Today (the 18th) SD had a count check and all his counts are lower than they were last week. This was a disappointing discovery because we had hoped that the steroids he finished yesterday would help boost them. They considered a blood transfusion, but the hemoglobin was so close to the line that they instead want him to get checked again on Monday. He is also neutropenic (low white cells, meaning little ability to fight infection), so we are in isolation mode.
So. Specific prayer requests this month:
- Stabilized red blood counts/no need for transfusion.
- All counts to rise on their own.
- No illnesses!
As always, we are so thankful for all of you, our praying and supportive family and friends! We love you!
I'm glad you got to go home without more problems, but I'll be praying about his counts and that he stays healthy while his white counts go up.
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