Wednesday, August 6, 2014

Day +68 Doing Well

It’s amazing to think that Ryan’s last transfusion of blood products was over two months ago.  This time last year, there were days where he needed multiple transfusions in a single day. Not only are his counts holding steady, they have gone up in the last couple of weeks!  His current counts are:

Platelets: 197,000 (Getting close to “normal”)
Hematocrit: 35 (Normal)
Neutrophil Count: 2830 (Normal)

The GVHD of his skin is still an issue at times, but it is much improved.  The PUVA therapy really seems to be helping.  As a result of the improvement, we have been able to continue weaning his steroid dosage down significantly.  If the current trend continues, he will be off steroids in about a month.  This is good for several reasons.  Steroids affect personality, appetite, add additional suppression to his immune system and cause bone loss.  Ryan’s last chest x-ray shows that he does have some bone de-calcification due to the steroids.  However, it is minor enough that it can be reversed by discontinuing the steroids and getting enough calcium and vitamin D.

Last night I had the news on and there was a story about a Florida clinic owner and his colleagues being arrested in a doping scandal for supplying steroids to both professional baseball players and high school athletes.  The reporter made a comment about the players being in trouble for taking steroids.  Ryan stopped in his tracks, looked a little alarmed, and then asked “Mom, am I in trouble?”  It was really funny, and it did spark our first conversation about how you should only take drugs prescribed by your doctor (and that are needed for health conditions), not drugs that are given to you by other people or taken for reasons other than being sick.

At Day +80 SCCA starts a pre-discharge work-up.  We are excited to be starting the work-up week after next. Ryan will basically go through all of the same tests and appointments that he did right before transplant, and then some.  This will include a bone marrow biopsy and chimerism test to look in detail at his marrow for any abnormalities, and to determine if he is still 100% donor cells.  They will also check his IGG level (the level of certain antibodies in the blood, made by the immune system to fight antigens such as bacteria, viruses, and toxins). He will have a skin biopsy to check the status of his GVHD, chest imaging (CT and/or X-ray), bone density scan, an oral medicine exam, and potentially a visit to the kidney doctor.

Then, as we approach Day +100, we will make a decision regarding whether his central line should be removed.  That is normally a big event for kids because it means that they can take a normal bath or shower in more than a couple inches of water, and without having to have their chest covered in plastic.  Some transplant patients are also given permission to swim at that point (although probably only if they have a pool at home where they can control the cleanliness and who enters the water.)  I think Ryan will be really happy if he gets a few late summer days in September to splash around in his kiddie pool once we get home.

In the meantime, we are spending most of our time avoiding the public, as much as possible, and trying to follow all of the strict post-transplant rules.  There are rules such as: he cannot sit on the grass, dig in the dirt, go hiking in dense foliage, be near fresh flowers or live plants, or eat nuts that are roasted in the shell (among other food restrictions). It is difficult at times to remember all of the rules and I feel like I am constantly telling him he can’t do something or can’t have something.

However, in some aspects, SCCA is not as strict as some other transplant centers.  For example, Ryan can have fresh fruits and vegetables at home, as long as I select them and wash them well.  He is also not required to wear a mask in public or outdoors (although at times I make him wear one anyway, and I will be especially strict about it as we enter the cold/flu season this winter).  Instead of a mask, SCCA just asks that we avoid going to places where he may have close contact with people.  Restaurants are okay, but there are dietary restrictions and we have to go at non-peak times when there will not be very many people. We play it a little safer and I am very selective about where I will take him, period. I try to limit his exposure to the public as much as possible, while still letting him have some time as a kid that feels mostly normal to him.

Last weekend was Seattle Seafair and the Navy Blue Angels were in town.  Ryan got to meet a couple of them at SCCA.  That made him want to go watch them fly.  Their show is always my favorite part of Seafair, so we set out to find a place where we could watch them, but not be too close to other people. We ended up driving around Seattle and catching glimpses of them overhead.  Then, we went to the Spaghetti Factory, which was Ryan’s first time dining in a restaurant post-transplant. Ryan really enjoyed dining there.  We had a window seat right next to the train tracks, so he was able to watch them go by.  Plus the Blue Angels kept buzzing by.

I was really paranoid about germs and kept having to tell him not to touch the wall, the window blinds, etc.  Then, he ordered a “Cotton Candy LimeAid”.  I snapped a few pictures because it cleverly came with a big puff of cotton candy on the straw.  Ryan loved it.  Then, after he had already had a few sips, I noticed there were wedges of fresh lime mixed in with the ice! I had to send it back and ask that they make it without any fresh fruit.  That incident was followed by me having to take pistachio’s away from him today because it dawned on me that he can’t have nuts that are roasted in the shells.  So many rules - but all to try and keep him safe and healthy.

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