Day 5: Separation & Progress

Today was the first day that both of the parents weren’t with Cristian for first time since diagnosis. This was tough for all us, parents and for Cristian. From our side it added a new layer of worry because of the unknown and “what if” scenarios. For Cristian there were times where he would ask for the other parent and not know why they weren’t there. We did our best to distract him and ourselves throughout the day. An upside is that we each got to spend a couple hours with Leena which was a wonderful breath of freshness. We each knew we missed her, and some time at home was just what we needed.

We are very fortunate that we don’t have to worry about care for Leena thanks to our wonderful parents. Leena has excellent 24/7 care and love at home. To Fitolio, Mimi, and GPa, our deepest thank you’s for being here to help us with everything as we go through this new uncharted journey. We literally couldn’t do it without you.

The doctors gave us some good news this morning in that Cristian’s Uric Acids are down in his latest blood test! We took Cristian off meds again today and will see if his body is able to self manage. Tomorrow will be another critical milestone on our path to getting home.

This morning’s Spinal Tap to check for leukemia cells in the spinal fluid went as planned, including another round of chemo. We didn’t get results back today, hopefully tomorrow. Afterwards Cristian was a bit grouchy for the rest of the morning until lunch time. We played a little but spent most of the time just trying to keep him calm or happy given the circumstances.

Once mom came to takeover for a bit, his mood increased dramatically. He even ate a good amount! This kid is going to turn into a chicken nugget!

Another big accomplishment today was that he used the potty and went #2! Don’t worry, no pics on this one haha. Constipation is a big concern at this point and a natural bowel movement means that we won’t have to put more chemicals into his body.

We did another parent swap in the evening to make sure we are each getting breaks and more importantly quality rest. Hospital sleep is more about short naps due to frequent checks from hospital staff and general stress/discomfort.

Wish us luck tonight…