We are on day three of four days of chemotherapy and Keira is doing great! Still eating well, sleeping as normally as she can between blood draws, has great color and is being her usual happy self!
Yesterday was a MUCH better day in thanks to a nurse named Marino who came in and got an IV placed in Keira’s foot in 5 minutes by herself! She’s my new hero after the IV debacle the first day of chemo.
They say Keira could start losing her appetite this week (so far so good though) and that the side effects of chemo (mucositis, hair loss, vomiting, etc.) won’t not occur until day 10 or after.
They’ve been leaving us to ourselves most days aside from nurses bringing in medicine, taking vitals and the physiotherapists coming in to “play” with her once a day. It’s not until the evening, after chemotherapy, that they need blood draws every two hours (in order to determine the next dose of Busulfan needed). Since tomorrow is the last day of chemo, tonight is our last night of blood draws (then hopefully we can get some sleep)!
One new thing on the schedule today was a blood transfusion, which they say is normal. Because of the continued blood draws during chemo they need to raise hemoglobin levels and this is how they do that.
Many have been surprised that chemotherapy is part of gene therapy at all but the reason is they need to weaken the immune system and make room in the bone marrow for the renewed stem cells with the corrected genes and ARSA enzymes which will be administered via IV through a virus (with the bad parts of said virus removed) in the gene therapy treatment on Friday. Once the new cells go into her bloodstream they will travel to the bone marrow and begin making new red and white blood cells. From there they monitor her closely as levels begin to increase and then she will hopefully live a long and happy life thereafter!
It’s honestly amazing this is even possible, and we are clearly so glad it is. The entire process is fascinating. I’ve always thought if I could choose another profession in another life that being an archeologist would be fun but now it may be a doctor doing this; not only because it’s a truly mind-blowing process but more so to be able to change the lives of so many children and their families like they are doing for us. Our world is changed for the better and we are so grateful.
Up next: Keira’s “rebirthday” on Friday, October 2nd! ❤