Back in March, our friend Dana made a video of the kids for Be The Match to encourage others to join the bone marrow registry. We had a ton of fun making this and, while the original intention was for this video to help encourage bone marrow registration, it has become a treasured keepsake and we will be so appreciative of all that Dana did to create this awesome video. For those of you who haven't seen it click here.
I know I haven't been keeping everyone quite so updated on Nathan's medical progress. And I guess that's a good thing because no news is good news. There haven't been any major setbacks. Things are mostly the same. Nathan is still on fluids every night and thus still has his picc line but we hope that within a month or two that will change so he can enjoy playing in the water this summer. They are tapering his anti-rejection immunosuppressant medication (tacrolimis) slowly and he may be off that within a few months if all goes well and the more they lower his dose the happier his kidneys are. He hasn't had a transfusion since December 5th, that 99th transfusion, and his counts are steady and mostly normal. In short, his bone marrow is working and it's healthy and doing everything it should be doing nearly eight months post transplant. They did a count of his CD4 t-cells a little over a month ago and he was at 155. Normal is above 400 and his doctor explained that, while Nathan is at a good level and showing appropriate progress post transplant, a count below 200 is considered a differential diagnosis to tell whether a person with HIV has progressed to AIDS. Obviously Nathan doesn't have HIV but it was a good reminder that he is still very fragile, very prone to infection and viruses and living with a very infant immune system. Evidence of this can be found in his near constant viruses. He has had minor colds and coughs on and off since even before transplant. The good news is that he has been able to fight them off, even when his immune system was non existent (don't ask me how), but still it is a reminder that I need to continue to protect him, be diligent about hand washing and limit his exposure to groups of children. His hemoglobin and red count are still slightly anemic but holding and almost normal. His doctors expect that those counts will rise as his kidneys improve because the kidneys release a hormone called erythropoietin which stimulate the formation of red blood cells within the marrow. But I want to stress that his kidneys are well controlled with copious water consumption and nightly fluids, and his creatinine and BUN (measures of kidney function) are only slightly above the normal range.
As far as his medications, he is officially off all steroids as his hydrocortisone was weaned completely last month. As long as he is on tacrolimus (immunosuppressant), he will continue to take acyclovir (anti-viral), amlodopine (blood pressure med), micafungin (anti-fungal) and a monthly pentamidine breathing treatment; the amlodopine and micafungin might be removed when his tacrolimus level is at a very low dose but the acyclovir and pentamidine are very important to continue until his t-cell count is normal.
Many people ask what I'm doing to help build him up and support his immune system and, in short, I cannot do much while he is on tacrolimus both because I need to be very careful and safe but also because we are purposely trying to keep his immune system suppressed to protect those precious transplanted stem cells. Until we know for certain that his system is stable and that his body and those foreign stem cells are cooperating well without the immunosuppressant, the goal is to just keep things as they are. My only safe and effective way that we can build him up right now is with food, lots of healthy nutrient dense foods, with an eye on specific foods and culinary herbs that may assist him in any particular challenge that he is facing. And lots of exercise too. He is eating and drinking very well, is as active as ever, and growing like a weed. He is in the 50th percentile for weight and above 70% for height; he is my tall skinny little beanpole. I'd love for him to put on a little fat but he has always been very thin, except when he was on high dose steroids of course, so I am just happy that he is eating a well balanced healthy diet and growing normally after all that he has been through.
In the fall, they will begin testing for iron overload. People who have blood transfusions are very prone to having excess iron in their systems which can cause serious long term problems. If that is the case, generally children are put on iron chelation medications or they will have regular phlebotomy, or both. I am preemptively attempting to get a handle on any and all safe food-based methods of helping his body release that excess iron now so that it is less of a problem later. There are several medical studies indicating that wheat grass juice is highly effective in helping people reduce their iron level so I found a great supplement that is simply 100% organic freeze dried wheat grass juice and nothing else. We obviously need to be very careful with giving him supplements right now but this one is more like encapsulated food since getting him to take a shot of wheat grass juice every day just wouldn't go over well (and this is doctor approved too, they're not sure if it'll make a difference but they agree that any food based support is safe).
So, that's really all we have going on right now. We are still being very careful about exposing Nathan to too many germs right now but mostly we are just living a nice quiet, laid back, fun life. And we are working on planning his sixth birthday party this coming July too. I can't believe that he is going to be six, and that he spent his fifth birthday and the following months, in the hospital. This is turning out to be one special year for this amazing little boy.
