Day 320: Starting The Last Phase

Since our last update we are happy to report that our family had a wonderful Christmas and New Years with everyone together! Leading up to us being discharged it was becoming very stressful that we might have to have a split Christmas, but I think that it only made it sweeter because we were able to appreciate the unity even more. Both of the kids were able to get way too many presents, and later we spent more family time building a gingerbread house!

Post Christmas we saw the arrival of family from out of town who had been anxiously waiting for the green light to come visit, including Mimi, Gpa, Aidan, and Nana. They made great time coming down from Colorado and stayed with us for almost an entire week. It was so good to see family that we hadn’t seen in a very long time, over a year for some of them. We were able to ring in the New Year surrounded but those who support us, including family from both sides. Cristian had a blast running around and playing with cousins that he had only met a few times. It was clear that we have a lot of “play time” to make up from this past year, something we plan to address with vigor in 2022.

Getting us to a spot where life goes back to normal means starting the last phase of treatment of Cristian’s Leukemia, called Maintenance. Today we Kicked things off with some blood work, everything came back great, and a spinal tap. Cristian didn’t really want to go back to the hospital and I don’t blame him, but he made the best of it and we got through things together!

For the maintenance phase things will work a little differently from what we have had in the past. Previously each phase lasted 2 months, maintenance will last for the next 18 months but will be quarterly cycles of the same treatments. We will start each 3 month cycle will include the following:

• Spinal Tap & chemo day 1
• Spinal Tap Day 30 (only the first 4 cycles)
• Steroids twice daily for the first 5 days
• Oral liquid chemo every Tuesday night
• Oral pill chemo every night
• Monthly clinic visits for bloodwork

All of this on top of the antibiotic that Cristian takes 4 times every weekend.

The net result is less chemo going into his body, but more of that chemo being given at home. While we would love to see no more chemo, this should be a vast improvement mentally for Cristian and the rest of us since we wont be going into the hospital every week.

This phase is where things finally get “back to normal” from a social interaction, mood, and physical state perspective. We are already seeing Cristian’s hair growing back and it should stay forever now, and we are also going to be able to do things a normal kid should be doing. Play time with friends, sports, eating out, and even school in the fall. We are finally reaching the light at the end of this tunnel. Yes we will have things to do that a normal child wouldn’t experience over the next 18 months, but for a majority of factors things will be normal. We have even started discussing a family vacation!

We are extremely thankful for the love and support everyone has provided us up to this point. We are eternally grateful to God for watching over Cristian and helping him conquer this illness. We will continue to provide updates on the blog here around how Cristian is doing as we stomp out this last step. We ask for prayers that God continues to watch over our family and guide us down the path he has laid out for us.