Stalked by the Stork...a diary of raising twelve kids
Friday, January 31, 2014
Five years ago today, Brandon stood at the kitchen sink, popped open a soda and took his very last dose of cyclosporine. We said a prayer, recorded it on video and then, learned to move on with life. At first, we constantly feared “it” would come back. We made lots of trips for blood work, and I sweated out that 45 to 60 minutes until results were back. My stomach would be in knots as I’d see Dr. Rob or Bob approach with the test results in hand. As they would walk toward me, I’d study their faces…did they look pleased? Worried? Did they have a nurse accompanying them to give me the results?(that usually meant bad news). Did they look like they were going to just hand me the printout or did they seem like they were about to sit down? (sitting is bad too, folks). Brandon had made it to a great place, remission wise, his counts were on the verge of complete normalcy, all except for H & H, which were just a touch below normal (and really, lots of people are that way naturally, so no biggie). He had his life back, we had our life back.
We knew he needed to wean off the medicine so as to avoid further exposure to some pretty serious side effects, yet we also knew weaning too quickly could mean a relapse of the Aplastic Anemia. We’d already had that (relapse) happen once before, and were fortunate that he responded to Cyclosporine a second time without the need for more ATG, so we definitely didn’t want to take our chances with a need for a third. So, we’d spent the better part of a year, slowly tapering off that medication…such a love/hate relationship we had with it. It made his bone marrow do it’s job, thus saving him from probable death unless we could find a bone marrow match, on the other hand, it put tremendous stress on his kidneys, particularly when antibiotics were also needed, which was quite often (we’d once had to stop and restart at a lower dose because his kidney function was suffering), it ran the risk of causing various forms of cancers and it took a horrible toll on his immune system (which was what it was supposed to do, that’s why it worked, but it left him vulnerable to every single virus within a ten mile radius it seemed and viruses in turn, carried the dreaded risk of relapse).
That last dose was such a bittersweet moment…it brought so much joy, and fear. Stopping the medicine meant it’d be time to find out whether or not his bone marrow could fly solo, and do it’s job, or whether its’ production was solely dependent on that Cyclosporine. So we waited, and waited and waited and watched and watched and watched. The first time Bandon was sick with a virus was a real test for his marrow. For any of us, when we are ill, we can experience a temporary minor to moderate drop in our blood counts, they normalize when we get better, and most of the time, we are none the wiser. In Brandon’s case, the theory is that when he caught a virus a few weeks before being diagnosed, his bone marrow never autocorrected and for some reason continued to slow cell production until it eventually came to a halt. So, any time he’d become ill, trips to clinic, blood work and IV antibiotics -heavy duty ones and lots of them -were the norm. Between going to clinic each time he was ill and frequently for “just checking” blood work, we wore out a path down I 64. Over time, we were able to decrease some of that. Eventually we were able to just bring him to clinic after a virus passed and make sure counts were up and at thee month intervals to “just check“. At some point we learned to stop fearing the results of the blood work each and every time. And one glorious day, it occurred to me, that I probably didn’t even really need to wait on the results…they could just call me with them or maybe just not call. No news meant they were fine. And they were. Now, all that’s needed is a periodic CBC which can be done at a local lab closer to home with the results faxed to Dr. Rob if there are any questions, and a ONCE a year checkup back at clinic. His port was removed and he is totally independent of any and all therapies, medications and illness.
Today, Brandon has made it exactly five years with no medication and very cooperative bone marrow. I’m not saying we never worry. We’ll always have a decent fear of relapse and the words “clonal evolution” are the scariest words I know. Clonal evolution refers to a risk that all patients who have had Aplastic Anemia face…about ten to fifteen percent of AA patients will at some point, perhaps years after treatment, develop MDS, or Mylodysplastic Syndrome that will then lead to a mylogenous leukemia. There isn’t really anything (that I know of) that can be done to mitigate that risk, it’s just there. The fact that he’s made a complete recovery and his counts are now completely normal bodes very well in his favor. So, things look amazing for him. We have no reason to think he’ll ever face any further problems from Aplastic Anemia. He has his life back 100 percent. He plays football, and wrestles. He can expect to grow up, get old and have a happy life. And that’s all we’ve ever wanted for him, or for any of our children for that matter. Tonight we are taking him out to celebrate. Anywhere he wants (which is the movies and Buffalo Wild Wings).
Happy five years Brandon. You are a strong kid and we’re so proud of you!