Where do these days go?

I absolutely can not believe I haven’t written since May 4! Days are very long & also, very short. I suppose, in all fairness, when I get “free” time, it’s spent with family. I try not to be glued to electronics. I do update Instagram a bit more often, it’s a quicker snap shot of what’s going on in our lives.

It’s June 29th and I’m at the hospital, but Kai is in the doctors hands at the moment, getting a full work up.

MRI on brain + spine, LP, hearing test and some labs to check his kidneys. This will tell us if he has had any cancerous re-growth since his last scans in April.

Let’s back up. We got through round 3 of chemo. It was just as hard as it has been, but we pushed through and with 4 transfusions of blood & platelets in the month of May, we got to the end of the month, his body had a successful ‘re-set’ and he started to feel better. We got some visitors! Our Auntie Lauren and Ashley came to visit (two separate visits) that was amazing.

Cruz had a gymnastics recital and a Pre-K graduation (that he didn’t participate in) he got shy at the last moment. We went to dinner, per his request and celebrated him as a family.

Round 4 came and it has always been said by our doctors that this round seems to hit the kiddos the hardest. It’s compounded. And gosh, it sure has.

We got through the first drug of the round and Kai decided he was going to stop nursing. One morning he was nursing, that afternoon, he refused. We offered him a bottle (which he had never taken one to that point, although we tried hard to get him comfortable with the option) and took it right away. I was thrilled. Cool, I’ll pump and he will be set.

Then, a week or so later (after his second hospital stay & drugs of the round) he decided he was no longer going to take a bottle (or any cup variation, we have tried countless) and also he was going to give up his pacifier…which he NEVER takes out of his mouth. He full on stopped sucking. Then came 2 top teeth, right when he developed an infection and his numbers were at zero, bringing on a fever and an unwelcome additional hospital stay. This one was really hard on us all.

We got a a much needed visit from Aunt Patti and Greg that brought all our spirits up!

I resorted to shooting milk into his mouth through a syringe, and he somewhat tolerated that but ultimately, it has not been enough intake and his kidneys are overworked and depleted. He’s dehydrated. They have put him on fluids. He has been given 5 blood & platelet transfusions this month (round 4) and his body has yet to ‘re-set’ on it’s own. His white blood cells and his ANC are doing a good job at climbing, but everything else is slow moving.

All of this is disheartening, but I would say that him not getting the fluids he needs is the hardest. He is eating like a champ, but says no to any instrument of fluid intake you put in front of him. and when I say he says no, he actually shakes his head and gives you the sternest look. He is one very stubborn and smart kid.

His birthday is Thursday. One year old. 4+ month of fighting cancer so far. He was meant to get a break from his port being accessed, from this hospital for his birthday, a visit with our dearest friends and before he starts radiation, but right now he will need fluids & labs until he starts drinking again on his own, so no break.

Next up is radiation. Focal, proton, 5 days a week for 6 weeks. We come back in a week to do another day of sedated scans, but this time for the radiation team. They will come up with Kai’s plan and we will start that next chapter and continue to fight and be hopeful.

First, today’s results. So much emotion around today.

So much hope.

one love.

hug your loves.