I have been told in the past that I have the ability to show lots of patience…however, this time my patience is being tested. It is an odd experience waiting for your child’s bone marrow to stop producing the cells that sustain their life. As we are now a week into Ryleigh having her infusion of cyclophosphamide, it is odd for me to think about what is happening inside her body. She has also had four injection of the granulocyte colony-stimulating factor or G-CSF. Hopefully this is stimulating her bone marrow to create lots and lots of stem cells so they can harvest on Monday. Then we have to wait and see when she can actually begin the steps towards transplant. Ryleigh has been amazing…handling the injections with courage and accepting the changes more calmly. She seems relieved about the process. I believe part of it is because there is a protocol and she knows what may come next. Unlike last year, which was a series of mishaps and complications. Even now, she knows there will be complications but she is aware of the typical ones and can mentally prepare for it. We have been waiting so long for Ryleigh to get some relief from her IBD that a few more days/weeks should not seem like an issue. But, I am a little antsy…
Chloe, Ryleigh, and myself are taking this time to rest and prepare for what is to come…and if you know me, hanging out and resting is not an easy task for me. Chloe and Ryleigh are good role models for me as they know how to rest and keep whatever energy they have reserved for when they need it. My experiences over the last few years have resulted in going at a pace that is constant. Hitting the brakes and resting is a challenge…how weird is that? That being said, I do admit that resting is hard to do when I have so many worries on my mind. Being distracted by work, chores, or other tasks helps keep the worry away – worry about the transplant, the emotional well being of my family, finances, my own health, Chloe’s health, etc….I try my best to be mindful and take the worry as it comes but sometimes it is so overwhelming!
Luckily, I have the strength to deal with these overwhelming moments and persevere…next appointment is 8:30 on Monday morning — if Ryleigh’s counts show lots of stem cells — harvesting is a go! Fingers are crossed.
Leave a Reply