On this trip, we were able to stop by an aquarium and spend some time doing something fun. I have always loved looking at the glowing sea-life God has created. There is such beauty in the glow – almost mesmerizing at times and always peaceful. Bioluminescence is a design God made for quite a bit of sea-life. It works as a defense in many cases; however, it can be used to communicate and for other purposes as well (I’m sure you all wanted a science lesson).
Two things stuck out to me when viewing the jellyfish: 1) God gives us what we need; He is a good Father and cares for His creation. 2) He is a creator of beautiful things; the Bible tells us that all creation displays the glory of God.
Even in the midst of a broken time and a broken world, I need to remember that God calls us to look to Him and to keep our eyes on Jesus (as Peter was reminded of). God has given us reminders of his glory and beauty to point our gaze back to him. May we take time to look upon His creation and be reminded of just how majestic our God is.
Visit Update
If you are reading this, you have likely heard of our family and our sweet JC. There are many who have reached out for updates, and it is our desire that this blog should serve that purpose. We will attempt to update this blog weekly, but please be patient with us on this endeavor.
First and foremost, we would like to thank the many people who have come along side of us in this journey. Your support and kindness have meant so much. Your prayers have been a blessing which we feel can never be repaid.
This past week, we had a couple of appointments for JC that brought praise and tears (like much of this journey has). In August, there was an MRI completed which showed iron overload in the liver and heart – the technician noted this overload as severe. Unfortunately, iron overload over time will damage organs, so it is best to reduce the iron prior to transplant as the chemotherapy used in the transplant process also taxes the organs. The appointments this past week were to address the iron overload.
The first day, JC had a bone marrow biopsy which went relatively well. This is her 5th one to date, so in some ways we are used to this procedure. However, there is always pain at the site afterwards, and a risk of infection due to her low counts. Thankfully, the site looks well, and the paid subsided after a few days. We will not know the results of the biopsy until later this week.
The second day, JC had and EKG and ECG to test her heart. We also met with a cardiologist to review everything. A huge praise is that the EKG an ECG both showed normal function. The cardiologist does not anticipate needing to see her again except for annual follow ups. The bone marrow transplant team will consult him if needed, but he cleared her heart at this time.
Next, we met with the bone marrow transplant team. She does have 2 fully confirmed matches in the donor registry that are 10/10 matches. This is an enormous praise that we have continued to be grateful for. The transplant team is going to try an IV therapy to increase JC’s ANC count. This will need to be approved by insurance. The goal with attempting to increase her ANC count is to delay transplant long enough to remove the iron from her organs. The doctors are very concerned about this count as your neutrophils are what fight off infections. Her neutrophil count has been low for over a year now, and every fever requires hospitalization at this point.
Finally, we met with the hematologist who will be addressing her iron overload. She has much experience in chelation therapy, so the other hematologists have referred JC to her. Chelation therapy is a drug that works to bind metals to it and remove the metals from the body. JC’s platelet count is low, so there are risks of lowering her platelet count even further when using chelation therapy. The hematologist is recommending an oral drug to attempt to increase her platelet count prior to starting chelation therapy (this too will need to be approved by insurance). The chelation therapy she is recommending will require JC to have a pump much like an insulin pump, and the medication will be administered each night through the pump over 10 hours; again, this will need to be approved by insurance. Chelation therapy is very effective in reducing iron buildup; however, it takes 3-6 months for this process to work.
The biggest take aways from last week’s appointments are: 1) We will need to wait for insurance approvals. 2) Transplant will likely be delayed for a minimum of 3 months from the start of chelation therapy. 3) We will need to complete a 2nd MRI in October to verify iron overload in the heart and liver (there are differences of opinion on this, so reassessment is necessary).
As always, we are thankful for prayers for JC and our family. I specifically am praying for wisdom, endurance, and healing. Wisdom for the doctors and us in all decisions made for JC. Endurance to continue this course and fight for the life of our daughter – Endurance for JC; that she will be able to remain strong and courageous throughout treatments. Healing for JC’s body, and that her medications would work to address the problems intended while remaining free of negative side effects.
Love Grace Hope 