Day 6: FREEDOM!!

As I posted earlier today we are finally home! The doctors gave us the all clear around noon and we were out shortly after that. It feels so great to have Cristian at home and you could tell he missed being home. As soon as we got home he checked all of his toys and even played with his little sister.

Earlier this morning they took Cristian off of fluids, which was the last step before we could be released. Following this they took blood around noon to confirm that his body was managing the Uric Acid effectively. His levels were slightly elevated from the previous blood draw but the doctors believe his body will do fine as long as we keep him on a lot of liquid intake. They will be checking his levels when we go in for chemo on Friday as well.

Later that morning we received training around home life changes to keep Cristian healthy. We already knew some of these, but it was a good list to review.

• Fever over 100.4, we need to call
• Stops eating or drinking for more than 1 day, we need to call
• Not taking meds, need to call
• No potted plants in the house as they contain a fungus that can harm him
• Frequent hand washing
• No food or drink sharing

We were also able to get a lot of great information from the dietician around how we can give Cristian’s body the best chance to handle the chemo and beat this outright!

• His current diet is fairly well rounded, except missing dairy
• Add 600 units of vitamin d daily
• Add 50 milligrams Vitamin C daily
• Add 800 milligrams Calcium daily
• No folate or iron
• Continue grazing habit for eating, large meals may contribute to nausea
• Don’t force foods or meals if he is not hungry, can create a long term negative association with that specific food
• No concern if he skips meals or a day without eating
• Fluids are critical for his body, should not go a full day without drinking

Prior to being discharged with spoke with the doctor about the spinal tap from yesterday. We do still see a few leukemia cells in the spinal fluid. Not concerning at this point or anything that would increase his risk level. This does mean that Cristian will need at least 3 more spinal taps, 2 more than the standard treatment amount.

By the early evening Cristian was starting to lose steam. With all of the things he has been through in the past week we were not surprised. He was looking forward to sleeping in his own bed and there was no pushback when bedtime finally came.

We are extremely fortunate to have so many people who care about Cristian and our family. Thank you to everyone who reached out to us, left comments here, or prayed for us over the past week. We know that we aren’t alone in this, and that means a lot. Thank you all!

It is 8:35pm as I’m writing this, and now that it’s done I’m going to pass out.