Thank you for bearing with our unanticipated summer sabbatical from the blog! This summer has been full of life changes, events, and some good news!

JC has gone all summer without needing a blood transfusion! There are not enough words to describe the elation and thankfulness we have for this unexpected blessing! Her hemoglobin has been in the normal range for 2 weeks which is astonishing! Although this was not anticipated by her doctors, they believe it has been achieved through one of the medications she is currently on. I am learning that God is the giver of good things, so even if it is a positive side effect of a medication; God’s hand was in it.

Since JC has not needed blood transfusions, her iron overload in her organs seems to be decreasing at a faster rate. This is the news we have been waiting to hear! We go this month to have an MRI of her organs to get an accurate number of the iron levels within her organs.

We the received good news that her white cell counts are starting to increase as well! This is amazing news as these are the cells her body needs to fight off any infections that she may encounter.

The toughest news we received this summer was that JC has a very rare gene abnormality that is known to cause issues. From my understanding, the gene affected is a pathway gene for different functions of your body. This means that the abnormality can affect different areas of JC’s bodily functions. They believe this to be the cause of JC’s blood issues and epilepsy.

It was hard news to hear, but for years we have been told she likely had a genetic coding issue; they just couldn’t find the specific issue within her genes. I’m thankful to gain more understanding and insight into JC’s condition. The information available on this specific gene abnormality only spans 4 cases which means there is very little known about what outcomes JC may face and which treatment options are the best. As parents, this makes the decision process much more challenging.

Her team of doctors are still considering a bone marrow transplant as a treatment option. We will meet with the bone marrow team after her MRI to discuss the transplant option in more depth and see if it still is the best course of treatment for JC.

We have enjoyed an eventful summer with lots of swimming, family time, and some life changes. The last two years have been highly stressful navigating a completely different routine and additional set of medical problems. This summer has held a little bit of a reprieve from the high stress and large amount of appointments. I have been so thankful for time to sit back and breathe a little bit from the racing demands. How many times do we miss the beauty and people around us because of stress and thoughts inside our heads! One thing I keep coming back to is that God is faithful and with us. His creation points us to Him and to His great love for us.

Thank you for continuing to hold JC up in your prayers. Thank you for your faithfulness, friendship, and cards! This has been such a long process, and your kindness and faithfulness has been such a blessing!