Paused for Processing

I was drafting a different blog post on Thursday afternoon. 

I was planning to break down what we knew about Aaron's condition--mostly that it had started as a single line problem affecting just his platelets but had morphed into a multi-line situation. I was going to explain all about the hemolysis (destruction) of Aaron's red blood cells and why that was keeping him in the hospital. I was wanting to tell you about how happy it made all of us to get our all-time favorite nurse for three days in a row. I was hoping to share the semi-good news that Aaron's counts seemed to be stabilizing. Mostly, I was planning to confidently share that all of the evidence seemed to point to this being an antibody, and not a transplant, problem. One of the strongest proofs for this was how suddenly Aaron's system collapsed. I was sure that if something was going on with his bone marrow that we would have had some warning in the months leading up to it: volatile counts, a worrisome chimerism, that sort of thing.

I was in the middle of writing all of this out when my phone rang. I saw that it was Mike, and I answered quite cheerfully, without any sense of impending bad news: "Hello?"

He didn't waste any time. "The team just came in with the results of the biopsy. It isn't good. His cellularity is less than five percent. His bone marrow is almost completely destroyed. He will have to have a second transplant."

The words were going in, but they were not registering. "What?" I kept saying. "What do you mean? This doesn't make any sense. I don't understand what you're saying." After all, I was in the middle of writing a blog post. I had it all figured out, you see, and this bomb did not have any place in the picture.

I have had bad days before, but that Thursday afternoon/evening is a top contender for sure. I should have been prepared for this kind of news. The doctors had mentioned several times that a second transplant was a possibility. But in my need to bring order and understanding to my life over the last two weeks, I guess I had kept the facts that made sense for the reality I was constructing in my mind and discarded the rest. 

Mike kept talking: "They're saying this a relapse of aplastic anemia. They gave me a medical paper that talks about cases like his with majority donor chimerism and occurring late after bone marrow transplantation. It's very rare, but it has happened before." 

The weight of his words finally caught up to my brain, and I stopped saying "what?" and started crying instead. I thought about the first transplant and what it would mean for all of us, but especially Aaron, to have to do it all over again. "It's just too much," I said.

The one good thing from Thursday was that they let Aaron come home. I couldn't bear for us to be apart in this moment when we just needed to hold each other and weep. Mike asked the nurse practitioner if it would be possible. They had already been planning on sending Aaron home the next day after one more round of Rituximab, but they said if Aaron was willing to come back into the clinic in the morning, then he could go home.

Being together has made all the difference. The boys have been so glad to have Aaron back. There is truly a gaping hole when he is not around. And Mike and I have had long conversations stretching into the night and resuming in the morning as we've tried to process and understand it all. 

When Mike and Aaron were back at the hospital yesterday, one of nurse practitioners said, "We wish we could hand you a package of answers, but it's a complex thing." From what we can gather, there are only a handful of cases like Aaron's that have occurred over the last decade.

Graft failure and a second transplant in and of themselves are not unheard of, but it's the way that Aaron's happened that is so rare. There are typically two ways for graft failure to occur: either the graft never fully takes or the recipient's cells gradually take over the donor cells. But neither of those is what they think happened in Aaron's case. He had a strong graft, majority donor chimerism, consistent numbers, good health, and more than a year since transplant.

A blood chimerism from two weeks ago showed that his whole blood was still 94% Maxwell's. We are still waiting for the chimerism from the biopsy to come back, but the doctors do not anticipate a change. So instead, it looks like the graft failed because Maxwell's cells also experienced aplasia (bone marrow failure). 

We don't know what caused this to happen. It's one of the many mysteries in this whole case. The T-cells have always been a bit of a wild card. While everything else in the blood was 100% donor cells, the T-cells have held onto a small percentage of Aaron's (the chimerism from two weeks ago showed that the T-cells were 87% Maxwell's--hence the 94% whole blood percentage mentioned above). The best guess at this point is that Aaron's (not Maxwell's) T-cells, which were probably the culprits in the first place, destroyed the bone marrow again. 

There maybe was a little hint that things were not as they should be a year ago. At that time, Aaron had a bone marrow biopsy, which found his cellularity to be around 20%. The doctors admitted that this was lower than they hoped to see but also not necessarily cause for concern. I wrote more about that conversation in this post, but the words "second transplant" were briefly whispered before being tucked away. 

There is one more piece of this puzzle that maybe puts Aaron in a class entirely by himself. Before transplant, Aaron's blood type was A+ and Maxwell's was B+. We had been told that following transplant, Aaron's blood type would change. But when he was getting a blood transfusion last week, I listened as the nurses read off his information, and they said, "Recipient is A+." I let them finish, and then I said, "Wait. Aaron is A+? He is supposed to be B+." I mentioned this to one of the doctors the next day, and it kind of stopped him in his tracks. He was as baffled and confused as I was . . . not exactly what you want your doctor to be.

In the days since then, the whole team has tried to find an explanation for this, but they have all drawn a blank. As far as we can tell, this has not been seen before. We have no idea if this has any bearing on what happened with Aaron's bone marrow or if it is just a random anomaly meant to throw us off the trail. 

When we got the disappointing results from the biopsy, the floodgates of our emotions opened (and when I say "our," I am mostly referring to mine. For better or worse, I haven't seen Aaron cry about this yet). It was difficult to think because the pain was suppressing everything else.

But the thing about bad news is once you have it, you start to deal with it, and that has certainly been true for us. We are still crying, but we are also thinking, researching, discussing, and planning. We have to move forward. That is the only way through it.

The problem is, the path is not totally clear yet. It is not as simple as, "Let's get that boy a transplant!" We have many things to consider, not the least of which is all of the serious complications that could arise from another transplant. We are looking into any other possibilities for treatments as well as thinking about the potential for a different donor from Maxwell should we move forward with a transplant. There is also a slight, but not impossible, chance that the drugs they've been using to stop all of the blood cell destruction could give the bone marrow space to start working again. We can't make any definite decisions until we get the chimerism back from the biopsy.

Our hope and optimism have definitely taken a hit through all of this. Feelings of despair and grief have threatened to overwhelm us. The words, "This is not fair" have been thought and spoken. But as I sit here writing this, my faith is struggling back to the surface. Two thoughts in particular have been an anchor to me during this time. The first is a verse from the Doctrine and Covenants: 

"I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up" (D&C 84:88).

I have had the sweetest, most tender experiences as I have repeated this verse over and over again in my head. I will probably share more about these at a later time, but I strongly believe we have been surrounded by heavenly forces, probably in large part because of all of the prayers being offered up on Aaron's behalf.

The second is something that Elder Joseph B. Wirthlin said. Every time I think about all that Aaron has lost, and still stands to lose, from this illness, I feel such heartache and anger. He will never get these years back, and this is such a formative and critical time of life. It just hurts so much. But I am holding onto these words from Elder Wirthlin: 

"The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way" (from Come What May, and Love it). 

I know that he was speaking in an eternal sense. This doesn't necessarily mean that Aaron's childhood and adolescence can somehow be given back to him. Every loss is not compensated in this mortality. But there is something very comforting in the belief that God sees this hardship and sacrifice, and it will not be for naught. The blessings will come--some now, others later. We can be certain of that. We are already seeing it.

One thing we will never get over is how kind and generous people are. We have such a strong support system of family and friends who don't abandon us when the going gets tough but rather rally around us. The thought of all of you bearing this with us brings quick tears to my eyes. We will never forget it. Thanks for sticking with us.

I just love these five so much. They are all troopers. 

(Also, I know some of you who are reading this might not have known us when we went through it the first time (the fact that I am now using the words "first time" and "second time" makes me sad). I have written all about this experience in other posts, and those can be found here under the label "aplastic anemia.")