To cheers and a standing ovation, Ezra Jordan Fineman, for the second time in his young life, slowly walked himself out of the pediatric bone marrow transplant unit at Sloan-Kettering yesterday. Yes, we are home! We've known for about a week that discharge was on the horizon, but we had no idea of the timeframe the doctors had in mind, and it was all day by day depending on how Ezra was doing. Then suddenly it was you're out of here, pack your bags, adios! In the past few days, Ezra turned a corner and his appetite kicked in and he started eating more, drinking lots and maintaining his electrolytes without IV fluids. That was the sign the doctors were looking for to know he will be ok at home. So here we are.
We still can't believe we're home. Last year we weren't discharged until Day +66. This time it is Day +28. A world of difference.
Discharge day was busy and chaotic with last minute meds and packing. And then came the part we were most nervous about - Ezra needed his central line pulled out. We will now use his mediport for labs and medications. Ezra was traumatized by the last incident when the line broke and has been having nightmares about his central line, so we were very concerned about doing it again. But with the help of his fabulous friend Jessica from child life, he did amazingly well. Please, please let this be the last time we ever have to think about a central line.
When we first arrived home, Ezra was in a fog of pain, but slowly the fact that he was home settled in and we watched with joy as he ran from toy to toy as if we had let him loose in a toy store. The house feels so bright and clean and the air outside smells beyond fresh. The best part is the quiet - no beeping pumps, vitals all night long, or linens collectors slamming the door open early in the morning. Ah, home.
We still have a not-so-healthy child on our hands. Ezra has only the beginnings of an immune system and remains extremely susceptible to infection. His counts have been low lately and dependent on the drug that stimulates neutrophils. He is also still in pain from his stomach and legs. He remains on pain medication and the hope is once we are settled at home, the pain will begin to subside and we can wean him off the pain meds.
Ezra will be watched very closely, so closely that we are going back to the hospital tomorrow for a counts check and any necessary meds. Then we will be at clinic at least three times a week. At the first sign of fever or any other issue, he will be re-admitted. Hectic, but we'll take anything as long as we can sleep in our own beds!
We are grateful to the doctors who have successfully gotten Ezra this far and to the fantastic nurses of M9. Ezra's nurses can best be described as caring, compassionate and creative, with a sprinkle of silliness. They did an amazing job caring for Ezra last year, but this time around, the care was even more seamless because they knew Ezra and his particular ways. They got him (and us) through very tough days in the best possible ways and even made him laugh. The fact that they clearly earned Ezra's trust says it all. We hope to see you again only on the outpatient side!
Last year our homecoming was filled with fear and disappointment as we knew the transplant did not go well. This time, we are allowing ourselves a little bit of hope that things will continue to go well, and in the upcoming months we will see new healthy T cells. As we were sitting in traffic on the FDR on the way home, Ezra was chatting away about all the landmarks he loves to look at during our trips back and forth to the hospital, and he started talking about the bat outside Yankees Stadium. For the first time, we thought maybe, just maybe, he will get to go to a baseball game in the future. Maybe not this year, but it no longer feels like never.
We will continue to keep updating as we enter the next phase of this very long journey. Please continue to pray that Ezra remains infection free, that no GVHD develops, and that his new immune system continues to grow. Thank you to everyone for your support - you have carried us through these dreadful days and we know you are behind us as we continue the fight for Ezra's cure.
