The day that we received the news, we obviously did as much research as we could. Through this, we stumbled across an organization and submitted a contact form for support. Literally within a couple of hours, they had emailed us and put us in touch with Dr. Kurtzburg at Duke University. Dr. Kurtzburg specializes in Ezra’s genetic disorder, as well as ones similar to it. She and her team are the ones who piloted the stem cell transplant for kids like Ezra about 20 years ago (this is still a very new treatment). We were able to talk to her on the phone that night and she tracked down Ezra’s labs. We couldn’t believe that a doctor would take the time to call us the same day, but she is passionate about her job and the children and understands how critical time is with this disease. By the next day, she had everything in place for us to get to Duke.
Since arriving in North Carolina the day after receiving Ezra’s diagnosis, things have been a whirlwind. We arrived at the hospital late at night and they immediately started drawing blood for labs. Everyday for the next week, Ezra was doing test after test, as well as surgery to have a central line put in (to draw blood from and give IV meds) and a g-tube put in (for medications and in case he gets too sick to breastfeed). Between all of the tests and meeting with the doctors, we barely had any time to process. We were just in crisis mode. After all the tests were done, we were able to start the treatment process.
Treatment for Ezra’s disease first consists of chemotherapy for 9 days in order to completely clean out his own bone marrow and take his white blood cell count down to 0 so that the new cells can overtake his body. He first needed a blood transfusion to prepare for all the blood that would need to be drawn during this time. The doctors say he will probably need another one before chemo is done. Needless to say, this is rough on such a little body. This consists of 3 different chemo medications, each one stronger than the next. Ezra is currently on day 6 of chemo and did well for the first 5 days other than some fussiness. Today, he was noticeably more fussy and also had some nausea/throwing up. The doctors informed us that the effects of chemo typically don’t start until 5-7 days after treatment ends, so to prepare for him to get pretty sick during that time. We are hoping and praying that he does well and is in minimal pain and discomfort. After the 9 days of chemotherapy, Ezra will have one rest day before his stem cell transplant.
The stem cell transplant itself will be someone anticlimactic. They administer it the same way that they do a blood transfusion, just over a longer amount of time. It will then take several weeks for his new cells to (hopefully) engraft for his body to be able to use them as his own. The stem cell transplant will provide Ezra with the enzyme that his body is missing and in turn, prevent or slow the progress of the disease. When does early on before symptoms occur, as in Ezra’s case, the doctors have seen promising results. The doctors shared that before the cells engraft, patients get very ill, which means that their body is starting to accept the cells. We are not looking forward to watching our baby boy in pain, but also know that it is ultimately a good thing and the transplant is working.
We continue to ask for prayers as his road to recovery will be tough and has has a lot to go through yet, but we are hopeful. There are still a lot of unknowns as to how this will affect him long term, but are committed to doing whatever we can to ensure he has a full life regardless.
-R & K