Resiliency

While not the greatest picture, I wanted you all to see what Ethan has been up to the past few days at home….SLEDDING…Going outside to play in the snow at least once a day, usually twice. Resiliency…kids are so resilient. If I wasn’t with Ethan when this happened, at the hospital with Ethan, talking to the doctors, understanding test results, there is no way I would believe Ethan had a stroke by looking at him now, and seeing him go, ALL DAY LONG! The only evidence right now are his results from an MRI, which proves to us that he had a stroke.

Now, one week later, he’s back…our Superhero is back…and yes, we wonder why this happened. We’ve spent the three days at home, recuperating, all of us recuperating…emotionally, mentally, physically. While I stand strong every hour in the hospital, I come home and my body shuts down. It needs to recover. Thankfully Grandma Mary is staying through tomorrow…knowing that we’re all okay now. As I ran errands yesterday, I have quiet time in the car, alone. First time being alone since this all happened. My mind races, and I finally realize how traumatic everything has been the past week. More emotion that I can’t quite express, can’t get a handle on, but will over time.

Over the past few days, I have been trying to talk to Emma and Eliot about last Thursday’s excitement. While I have no background in psychology, it’s very evident that both of them are traumatized from our scary episode. Both of them expressing feelings in different ways. Emma is in denial, wanting forget, saying it didn’t happen and will never happen again. Eliot denies being sad or scared about it, he was “happy”, it was Emma that was “sad”…his words. Time will heal… We will continue to talk about it, openly and honestly, but gently too. Reassuring that everything will be okay.

Back to why this all happened…The doctors have no evidence of what caused the stroke. I spent many hours at the hospital trying to diagnose Ethan with an overall diagnoses, encompassing his deafness, leukemia, and now PFO (opening in the heart) and stroke (although approximately 20% of people have a PFO). While I did come up with a diagnosis (Fanconi Anemia) that had my heart racing and stomach churning, it was quickly put to rest the next day by Ethan’s primary oncology/transplant team. They said if he had Fanconi Anemia he would have never survived the transplant process, that he endured so well.

However, in our discussion, the transplant doctor mentions that a drug that Ethan has received twice in the past 2 1/2 months, recently had a “Black box warning” from the FDA. Darbepoetin is a drug that Ethan received to stimulate his red-blood cell production, and avoid another blood transfusion. In March, the FDA put a WARNING on this drug, and other Erythropoiesis-Stimulating Agents (ESAs). They can increase chance of blood clots and strokes. HELLO? Doesn’t this appear to be the answer? To me, yes…this is my answer for now, my scapegoat. I have further research to do though. What good does it do to know this? Well, for one, Ethan won’t be getting this medicine again! While I trust his doctors with their medical decisions, and I already ask tons of questions to fully understand the diagnosis and treatments, I know I have to ask even more questions now.

Ethan’s due back at Clinic on December 19, and then three weeks later on January 9. He’ll be seen regularly by neurology at some of his clinic visits. We’ll get back into our routine at home, and enjoy the holiday season. Our ice rink is slowly coming to fruition…Hopefully they’ll be skating soon.

Our urgent plea for prayers was answered…thank you. Once again, Ethan is saved. As I walk the hall of 6 West, I am shocked to see every room occupied. Every room has a “Happy Transplant Day” poster on it…Why? Aren’t these rooms empty when we’re not here? That’s what I think sometimes. How can all these rooms be needed? Why are there so many kids that are sick? Did you ever know so many bone marrow transplants occurred, at one center, constantly? Amazing that we have amazing medical care and modern medicine…Sad that the care and medicine are needed by so many. Resiliency…now we pray that all the kids have such resilience.