Back in the Hospital... Again

The inevitable happened... Nate had a fever that sent us back to the hospital. BMT patients cannot mess around if there are any signs of a virus or infection, especially in those precious early months just post transplant. I figured this was a "cross it off the list" sort of moment because, as much as I didn't want him to be re-admitted, I knew the possibility was there. It seemed that there were a variety of complicating factors that lead to his fever. First off, he started a new anti viral medicine (Foscarnet) last week resulted in some unexpected side effects... complete loss of appetite, vomiting, generally feeling yucky. Add to that a small case of sinusitis and an overgrowth of mucous in his airway and here we are. He had several blood cultures taken and a CT scan and thankfully there is nothing more that is causing his issues, no fungus in his system or bacteria in his blood or unexpected viruses and only a small spot of concern on his lungs that is really not much of a concern at all. He did start two new antibiotics to help clear the infection from his body and he is doing well today. Still vomiting or spitting up mucous (often times with some blood) and some random low grade fevers but very well all things considered. I really dislike this part of his treatment, the having to treat the effects of the treatment. But it's reality and I'm not going to sugar coat it. He is back on IV nutrition (TPN) for the time being because he is not eating. This should resolve once the Foscarnet is gone in a couple of weeks, sooner if he begins to eat again. And of course the IV nutrition adds additional stress to his liver and kidneys, and his kidneys are already being closely monitored due to being on two nephrotoxic medications simultaneously. But, like I said, this is his life right now. Tear him down then we can built him back up later. He has a very rare form of an already rare disease (if aplastic anemia is 1 in a million then auto immune  hepatitis associated aplastic anemia is maybe 1 in 20 million, with only a handful of cases each year) and just to be close to a team of doctors who truly understand it and know how to treat him is hugely reassuring. This is what needs to happen for him to heal, it's unfortunate but very true so to resent the disease or it's treatment is pure futility. I focus on healing instead, being thankful for the antiviral med because, even thought it is making him feel very sick, it also got rid of a virus that had potential to be far more harmful. Being thankful for having access to IV nutrition because he needs some nutrition to heal, even if it is suboptimal and further stresses his body. It's hard to not hate the disease but truly I do not because it serves no purpose. To put energy into hate is still energy and I have none to spare on negativity even if it's very justified. Instead I choose to count our many many blessings and put my energy into love. As with all things in life, this is temporary.

So now we wait... make sure the HHV6 virus is completely gone so we can reduce his anti viral dose... make sure his mucous and sinusitis is improving... and most importantly, get those cells ready to give him a little boost. We should be discharged Monday or Tuesday. Have I mentioned how much I dislike waiting? Ah well, I guess I need to reframe that too, as I am also thankful that we have the luxury of time and that he still remains remarkably healthy despite everything.

While we sit here and do all this waiting, I am spending my time reflecting on what our family has been through, continuing to count our blessings, making future plans and gathering ideas to make 2015 an epic fun year for our family because we all deserve it.

BMT +45

We had thought Nathan would have some real counts by now and hopefully be transfusion independent but it seems that things aren't always quite so simple. After going off the white cell stimulant (G-CFS), his counts plummeted. Yesterday his white count was down to .6 and he still had no red cell or platelet production to speak of. He is still getting platelet transfusions three times a week. He is also getting smaller doses of red blood weekly as they are keeping him quite anemic in hopes that'll send the signal to his body to start producing red cells. And they are giving him that white cell stimulant every so often just to help give his marrow a little bump if/when needed. I keep wondering why things continue to be so unpredictable and it seems there is no concrete answer. The most likely scenario is that his enlarged spleen and liver, the same organs that were chewing up platelets at a rapid pace, also consumed a large portion of his sister's bone marrow. This means that the cells that are left would have to work much harder to repopulate and produce blood cells. The great news is that the cells are there, our official chimerism results are great and show that 95%+ of his white blood cells are being made by her marrow and he is showing no signs of rejecting these cells either. The cells are there, they will grow, but it's just taking a really unusually freakishly long time. Unfortunately, he now has a new virus that we are treating very aggressively. It is the Roseola virus which, as a member of the opportunistic herpes family of viruses, can remain dormant in your body and then reactivate anytime. We never knew he ever had Roseola but I have been told that the vast majority of humans have this virus in their systems even if a large number have never even shown symptoms; and we are at least fortunate that he is still appearing healthy and symptom free even now. But appearing healthy is not enough for a child who recently had a bone marrow transplant as these seemingly benign little viruses can cause some serious complications. So he is being treated with a new medication to suppress the virus and, once the virus is gone, they will rush to give him some of the extra marrow that had been frozen for him. Hopefully waiting for the virus to be gone is a very short delay in the grand scheme of things and these cells should give him the boost he needs to help his marrow to really recover. It feels so reassuring to have this solution waiting for us. Knowing that he doesn't need to be re-conditioned before receiving the cells since his marrow is now essentially made up of her cells, and that he is no longer rapidly consuming platelets so the risk of the marrow cells also getting consumed like they were in the past is very slim. I think I might be a complete mess if it weren't for this. That his doctor took the step to keep these cells "just in case" is a beautiful thing since needing this sort of boost is a very rare thing. Of course, in the back of my mind I also worry that maybe it won't be so simple. But worrying will never solve anything and I have to keep positive for his sake and for my own because all signs point to his full and eventual recovery. It just may take even longer than we had hoped. And I guess that's OK; it's just a monumental task for my (lack of) patience.