I've tried to write this update several times and I just can't seem to make the words make sense. This update is almost two weeks late. I'm sorry about that.
Nick and I traveled to Birmingham on Wednesday, Dec 1. Nick's port acted up and needed to have the medicine to clear the line put in again. We met with the oncologist for the physical exam and nothing much was really found. The doctor didn't really have much to say this visit at all.
The doctor decided to go ahead and give Nick a 100% dose of IVIG. The IGG level was taking a long time coming back, so we just went ahead with it. Nick received 80 grams of IVIG. That roughly equals 1 gram of IVIG/kilo of body weight. That's a lot of IVIG. The nurse and I decided to try pushing the amount given per hour this time so that Nick and I could make it home before bedtime that night. Nick was able to handle it without having an allergic reaction during the infusion. This is great news. I hope that we will be able to do this more often. It really cuts the amount of time it takes for all of the medicine to go in. This time it took 4 hours for the infusion. Not bad with everything considered.
Here's the part where it gets tough and I can't seem to make sense of things.
On Thursday night (the day after Birmingham), Nick began running a low grade fever. He had some congestion and I assumed that the fever was from that. I assumed that Nick would need an antibiotic and would likely miss school the next day. Well, the fever disappeared as quickly as it appeared. That worried me a little bit. The last time Nick had fever that behaved this way was when the PTLD/lymphoma became active 4 1/2 years ago. Nick became sick from the cancer and needed chemotherapy.
Nick was fine Friday morning, but I went ahead and called Birmingham. It was finally decided that Nick needed to have his blood counts checked to try to determine if he had a virus or a bacterial infection. There was also the question if the port was infected and that had caused the fever. There were a lot of questions and no answers without having blood work done. So, off we went to the pediatrician's office late Friday afternoon.
The pediatrician ran blood work, a flu test, and a walking pneumonia test. He was congested and had developed a rough sounding cough. All of the tests were fine. There wasn't anything in the tests: no out of whack levels, no flu, no walking pneumonia. Nick being Nick, the decision was made to go ahead and put him on an antibiotic for the congestion. That's the standard course of treatment for Nick.
The question was raised if the weird fever could be a delayed reaction to so much IVIG. The pediatrician and the nurse in Birmingham think that could have been possible. That evening, I gave Nick a dose of Benadryl and the fever was gone.
Then it came back five nights later...
Nick has no other symptoms. Nick feels fine. Most of the time the low grade fever starts around 8 or 8:30 pm and is gone by 11:00 pm. If not by then, it is gone sometime before morning. Nick has finished his antibiotics. The congestion is better. The only thing that I know that fits this pattern is the cancer becoming active.
There isn't much that can be done right now. Nick is feeling fine. We're going to get through Christmas. Nick's next scheduled appointment is on Dec. 29. That's soon enough to begin addressing this. I am monitoring Nick very closely and if anything changes we will be right down there. In 2006 when this happened, it took 6-8 weeks after the weird fevers started for the oncologist to get the chemo plan worked out.
I could say that I am not worrying and I am letting God have this, but that would be lying. I'm not handling it very well. I am handling it by exerting a lot of energy to keep from thinking about it ALL the time. I am trying not to worry the kids. I am trying to keep a low profile (as much as possible) on keeping track of Nick's temps every night. By that, I'm trying to check his temps when Kacie is occupied with something else. She gets scared and worried when she sees me having to keep such a close watch on Nick.
I don't even know what to ask in the way of prayer requests. Pray as God leads.
Trying to remember to remain in His grip,