Day 4: Homesick

Based on yesterdays blood work the doctors decided to stop administering allopurinol which is meant to keep Uric Acid levels down. Unfortunately, in the blood tests this morning Cristian did have high Uric Acids levels. Uric Acid is a byproduct of cell destruction and is very hard on the kidneys. High levels of Uric Acid can lead to kidney stones and other damaging affects. Because of this, the doctors have decided that we need to stay in their care until at least Wednesday. The goal will be for him to be off of allopurinol and IV liquids for 24 hours without seeing the high Uric Acid levels.

We also received results from the spinal fluid examination which was taken on Friday. The lab did confirm that there are leukemia cells in spinal fluid. This means that Cristian will need to have spinal taps twice a week until he has 3 consecutive clear results. Hopefully he reports back clear on the one tomorrow, and will only have 2 “additional” spinal taps.

We know that this process won’t be easy, and we know that the path to success is never a straight line. Even so we were very excited to be heading home today and hearing that we have to stay additional time is a blow to our already battered morale. To add insult to injury, starting tomorrow the hospital will only allow one of us to be here at a time due to Covid. This will be a trying couple of days for everyone.

I’m already looking for hiding spots so we can both stay here with Cristian!

Today Cristian also received another round of chemo. This was administered via his port while he was sleeping and we monitored him for any signs of discomfort or reaction. Luckily he took this round like a champ.

We also spoke with a dietitian today since Cristian hasn’t been eating much while here in the hospital. The meds he is on are known to suppress the appetite and the doctors want to make sure he still gets his nutritional needs met. This will most likely be achieved via some formula or additive, no talks of a feeding tube yet. Cristian must have overheard the conversation because later that day he ate a whole kids meal from Chick-fil-A!

Overall today was trying, both for Cristian and for us. On top of all that is going on here at the hospital, we have Leena at home which we miss very much. We know that she is getting excellent care from Fitolio, Mimi, and Tom, but we can’t wait to have both kids together.

Tomorrow we know we will have a spinal tap in the morning, and only 1 parent through the day, but hopefully a bit of silver lining with clear results from his spinal fluid.