I am very happy to report that Dorian’s last bone marrow biopsy was determined to be cancer free! During the biopsy we had a bit of a scare. Dorian’s lungs are damaged in the deeper/lower tissue from the harsh chemo and transplant process. We learned that great care needs to be taken when Dorian goes under anesthesia. His lungs spasmed and they had to intubate him since he lost the ability to breathe on his own until medication was administered. They extubated him quickly and he was recovering slowly so we had to spend the night at CHOP while he continued steroid treatment. At this point they warned us of Graft vs Host disease (gvhd) and said they were ordering a CT to confirm he had gvhd in his lungs. The Pulmonology team told us that they suspected he did have it, since in the weeks before, he was diagnosed with the skin ‘flavor’ of gvhd (a rash that presents like hives). Subsequently, the diagnostic CT showed NO LUNG GVHD!! Praise God. They were clear that lung gvhd often ends in double lung transplants after 2-5 years of suffering. This was the roller coaster car pulling into the platform. Can you see my hair?! I still can’t breathe. 

A week later, Dorian went back under with safeguards in place to have his Broviac central line taken out—a symbol that his treatment is done and we were going HOME. Not Ronald McDonald house home but, 6 Sun Valley Lane HOME. This time, all went smoothly. When he woke up from the anesthesia he was greeted by an awesome sign from the ‘3 East and South’ CHOP Oncology nursing team celebrating that he beat AML. (I have attached photos.) Additional gifts branded, “Bite Me Cancer!” drove home this message that he is done. It hit me. ‘Wait, we’re done?!?!’ It felt like I was still skating. 

We have been home for nearly 2 weeks. Trevor and I are back to work. Dorian’s hair is growing back (see photo). We are getting back to life as well as we can. There are still restrictions since Dorian’s immune system is recovering and will take about 8 months to fully recover. His immune system is that of a newborn. He can now fight basic colds and bacterial infections but childhood immunizations have been wiped from his system as our immune memory lives in our bone marrow. Replacement administration of needed immunizations will not begin until his immune system is finished developing. This puts us in July before he will receive the first one. Restrictions in place until then means he is not allowed to visit friends’ houses but friends (with proof of immunizations) can come to our house. He is also restricted from being in public but we are allowed to sneak him occasionally to Target or Game Stop with a KN95 and hand sanitizer at times when the stores are not crowded. The mask mandate was lifted here in NY so this will complicate outings for him. 

Tutoring resumes on Monday. He will have subjects added since he feels great. They added Singulair and Advair to treat his lungs and he feels great. Nearly normal. His most recent pulmonary function test done under this treatment shows he is at the low end of normal, so this is good. We are hopeful healing will occur and this will keep getting better. 

During the week of March 22 we have 5 days to spend in Philly. He will go under anesthesia again for another bone marrow biopsy to evaluate immune system growth. We have CHOP Oncology and CHOP Pulmonology appointments that week as well.  The follow up schedule will be every 4 months from the start of transplant which was 11/18. This is why March seems like it is upon us quickly after arriving home but, it’s the 4month mark from transplant. The next appt is in July and 12 months is November.  In between the CHOP appointments, we have once a week (soon to be biweekly) appointments with Albany Hematology/Oncology for monitoring. We will be establishing him with a Pulmonologist here as well so the frequent lung function tests can happen here not in PA. The team here will work closely with CHOP Pulmonology. We are also securing a therapist to deal with the PTSD and residual stress of being a kid who had been isolated for so long. 

This may be my last update for a while. Things will be moving slower, which is very good news. 

Because I’m still stepping off the platform and I just took my skates off, I have to keep reminding myself—Dorian beat AML! He did it. CHOP did it. We all did it. Thank you all for everything you have done to help. Prayers, cards, support, calls, texts, gifts. We love you all and will never forget the kindness and generosity shown to us since this journey began. You all share this victory with us because we never would have been able to do this without you. 

With love and gratitude forever,

Jill, Trevor and Dorian