Day 12 on the road to recovery…
(If you don’t have time to read this whole blog, please see our request for blood and platelet donors first)
Ups and downs. Good days and bad days.
On Friday afternoon we received some exciting news; the doctors felt comfortable sending us home. After a full week in the hospital, we were so grateful to be able to go home, and enjoy a nice Friday night Shabbat dinner as a family. We sang our traditional songs, ate our traditional food, slept as a family under one roof, ate breakfast as a family, and began to prep lunch as a family.
However, as mid-day rolled around, we began to feel anxious since Sophie felt a bit warm to the touch. Sure enough, the thermometer displayed a fever, which signaled to us an immediate trip back to MSK, less than 18 hours after we’d left. For most kids, a mild fever (100.4) isn’t a big deal, but for any person who has just gone through chemo and has an exceptionally low blood count, a fever during the “neutropenic time period” (where blood counts are below a certain number, signifying a very lowered immune system), requires immediate hospitalization and at least 48 hours of IV antibiotics administration.
By Sunday we were told that her counts were low enough to require her first red blood transfusion to give her a bit of a boost. Going through this for the first time was pretty overwhelming and frightening, but after speaking with other parents, we were informed that this was par for the course. The transfusion happens almost completely behind the scenes over the course of 3-4 hours, and is administered through the same IV or line as her antibiotics and in most cases chemotherapy as well. She was able to walk around the hospital and play in the play area while she was receiving the transfusion so she barely noticed anything out of the ordinary. Technology is truly an amazing thing.
While scary, our first transfusion experience has taught us to be ready and prepared for Sophie’s next cycles of chemo.
Now for our call to action. Each cycle of chemotherapy it is very likely that Sophie will require some kind of transfusion, either red blood cells or platelets. Memorial Sloan Kettering has a blood bank where we can set up direct donations (red blood cells and platelets) for Sophie during the times that she needs it. The donations are somewhat time constrained as the blood and platelets can only be stored safely for a set period of time. This means that each round of chemo, we need to line up at least 2 red blood donors and 2 platelet donors. Donations also need to take place at Memorial Sloan Kettering hospital. We’ve outlined many of the specific details on our new Blood and Platelet Donation page, so please feel free to review and sign up if you’d be able to donate. Once you sign up, we will send a follow-up email notifying you of exact dates that donations will be needed to see if you can be available.
Thank you so much in advance for your support with this important part of her journey…