It’s been quite an exhilarating couple days preparing for discharge. Today, at 1:30 pm, Idan marched proudly out the doors of the BMT Cancer Care Unit at Seattle Children’s Hospital for (what we hope is) the last time. After three days of cleaning, packing, and home care lessons, we were given the green light to go back to our temporary home in Seattle, and it feels so good.
As one of our doctors said to us the other day, we have jumped through so many hoops to get to this point and for Idan to be doing so well. That is a huge blessing and quite uncommon. There are still quite a few scary hurdles to overcome over the next few weeks and year (GVHD, viruses, infections, just to name a few), but at least the initial long hospital stay is in our rear view mirror.
When we think of all that Idan has been through and recovered from over the last few weeks, we are simply in awe of this remarkable resilient child. In no particular order: traveling 3,000 miles from home, saying goodbye to family, friends and his teacher, multiple moves from a hotel to an apartment to a hospital, 3 weeks of poking and tests before transplant, painful bruising after the central line surgery, an entire week of chemotherapy, fevers, a terrible itchy rash all over his torso, intense pain in his GI tract, reversion to pull-ups, getting tethered to an IV pole and losing all freedom, independence and privacy, midnight and 4am vitals interrupting his sleep, losing most of his hair, being forced to take a dozen new medications by mouth, C. Diff stomach bug causing more pain and more discomfort, and his first night terrors, just to name a few. Through all of this, he endured. But we were not without help. Visits from family and friends, constant support from the Seattle community, meals and household goods and appliances from Margot and her army of incredibly giving people, toys galore from Amy, her daughter Eliza and their family and friends, a car for our entire stay from Robert and Polly, the school teachers, Nomi and Katie, who volunteer their time to teach Idan each week, the family, friends and even a couple strangers who have sent toys, cards and notes of support, the stream of comments and outpouring of support from people following this page, it all adds up to be a formidable force – an army. Today, as Idan marched ahead, he walked quickly and effortlessly. He laughed and danced with our nurse. He is eating and drinking better than he did before transplant, takes all meds, and loves playing doctor more than ever. We couldn’t possibly be more proud of him.
We will keep you all updated as we check his chimerism in a couple weeks, which will be the first indication of whether this transplant has resulted in a cure, and Idan will continue to be monitored closely for signs of GVHD. In the meantime, we are excited to share this incredibly important and meaningful milestone with all of you. Thank you for being part of Idan’s army.