I am thankful to report that over the last week and a half we have been able to settle down a bit. JC is still undergoing chelation therapy every night at home, and with prayers, support, and deep breathing exercises, it has started to go much better. This has been a struggle as we have never administered medication subcutaneously (I don’t believe that is on the parent checklist), and it is heartbreaking to be a part of putting your child through needle pokes every night. JC has started to tolerate it much better, and she is such a trooper through it all. Unfortunately, we will not know how effectively the chelation therapy is working for a while. We were told in the beginning that chelation therapy is effective over time, so we must give it time (this has proved to be very difficult for me in reality). Prayers for patience and for the medication to work properly would be greatly appreciated on this front.

For now, we will be going to weekly appointments locally to check her labs and give transfusions and/or medications as needed. Each appointment is another needle stick, so we have been coming up with distractions as well as using deep breathing exercises to assist JC through that process. I am so thankful for kind and loving staff who have helped us through and continue to help us through each visit. They always go above and beyond to help JC with her concerns and anxiety. I am so thankful for my sweet friend who was a ray of sunshine this past week going with us to JC’s appointment.

We have had quite a journey in getting all the medications the doctors have wanted to give JC to assist her during this waiting period, but I am thankful that all those wrinkles now seem to be ironed out. I am amazed at the level of involvement her providers have been willing to give to ensure JC has the best outcome possible. I am truly grateful and ever humbled by their kindness. A couple people have asked, so I wanted to mention again that the doctors are still in agreement that JC needs a bone marrow transplant. However in order to increase her odds of a successful transplant, they are waiting until they can reduce the iron overload in her organs which we are hoping is only a 3-month delay.

We have had a lot of challenging days lately. I think the one thing that overwhelms me the most is that I know this is the beginning of even more challenging days. I am always thankful for the reminders that our God is a good God, and He promises to never leave us of forsake us. He is willing to be with us in our mess and be our guiding light to bring us out of the darkest nights.

Today was a hard day – it’s funny to say that because today was not a crazy multiple appointment, juggling kids, homework, and life kind of day. Today was a day of inconveniences that made life harder, but when I think back on today; it really was the perfect day to have crazy out of the ordinary issues because we didn’t have appointments, and all of the inconveniences were addressed. Tonight, we can sleep knowing all those problems have been solved, and we don’t have to carry them into tomorrow.

I say all this to say that in the midst of a lot of problem-solving, adaptations, and big emotions, my wonderful daughter decided we needed to bake a cake. I’m glad I baked the cake, and it is literally a sweet reminder that we need to see the blessings in life. We need to stop our worry and see the blessings of people showing up, helping out, and being willing to be inconvenienced to bless us.