So here we are. Ariella started her relapse protocol in June. It consists of 3 different meds, 5 days on and 2 weeks off. All outpatient, mostly oral requiring mostly only weekly clinic visits. She has completed 4 rounds so far. After the 2nd round the chest x-ray showed a decrease in the size of the lung lesion that showed up on the initial x-ray with no new lesions visible. Next up will be a PET scan. Once we figured out how to manage her nausea she has tolerated it pretty well. The worst side effect is probably diarrhea which can cause her some anxiety depending on where she is. She gets an icky taste in her mouth on chemo weeks and gets pretty achy just after chemo week likely due to the steroid she’s on during chemo. She gets fatigued but mostly she’s been able to do most things, even starting middle school right in the middle of a round of chemo. We had to cancel our Myrtle Beach trip but were able to go to Disney, LA, and Ocean City. Ariella’s biggest disappointment was that she couldn’t go to sleep away camp. This treatment is currently much less disruptive which is great. Her blood counts stay pretty close to normal so we don’t have to worry as much about being in crowded places and whatnot so we can continue to try to live as normally as possible.
In a few weeks or so Ariella will begin lung radiation. She also will have radiation to her sacrum as there were “irregularities” on the initial PET and MRI. Lung radiation will be about 2 weeks, 5 days a week and sacrum will be 5 1/2 to 6 weeks. That may be concurrent with the lung radiation depending on how she does. She will continue to get chemo during radiation.
If after 6-8 weeks after radiation she is showing stable disease she will then have a bone marrow transplant from David or me. We are both candidates but David will more likely be the donor because of blood type. The idea is that the new bone marrow will fight any remaining cancer cells since Ariella’s obviously doesn’t. This will be combined with a medicine that will hopefully boost the new immune system. The bone marrow transplant will be at Hopkins.
In the meantime we will continue living our lives. Ariella loves her new school (yay)! She doesn’t want to miss any because she thinks the classes are very interesting and loves the way the teachers teach. The dance season is starting so even though competition is again unlikely due to timing of things, she gets to actually dance again. We will be at CureFest next weekend and she will turn 11 in October. So more things to look forward to. Radiation and BMT will be much more disruptive but we will cross those bridges when we come to them. Thanks so much to everyone who has supported us to date and continues to do so. Thank you to Karen Sachs Academy of Dance Ariella’s 2nd family. She always had the studio to go to.
Thank you to everyone who read her story. And especially to those who shared it. Awareness really is important to get the funding needed for research. Because it could be any child. Childhood cancer is very uncomfortable but very real and it’s time for a cure. We need to talk about it, not look away. I wasn’t a cancer parent either, never thought I would be, until I was. Please share and spread the awareness. #AriellaStrong #PediatricCancerAwareness #MoreThan4 #ItsNotRare #GoldStrong