Hi Everyone,
Today I wanted to blog and give you an update on how Kai has been over the past two weeks since his transplant on December 8th.
Kai sitting in his portable bathtub. We use plastic wrap and waterproof tape to keep his central line on his chest dry.
For the first 5 days after Kai received his stem cells, he was very well. There were no reactions to be concerned about and he held up really well to all the drugs that he was getting. That was all good until around day 6 when he started to get very ill.
It took about 6 days for Kai’s old immune system to completely be erased from his blood. Although his marrow was already gone, the blood still has some bits of immune system kicking around and keeping the body happy. When Kai’s immune system bottomed out, he immediately got very sick. Kai got something called Mucousitis which is when the mucous membranes all the way from your mouth, all the way to “the other end” start producing mucous out of control because there is no immune system to keep things in balance. Mucousitis is something that was expected but it’s incredibly painful. This was the most sick he’s been in the past year since he was initially diagnosed, pretty scary time and really hard to see your little guy in uncontrollable pain.
In the picture below you will see that we decided to shave his head because his hair was falling out fast.
Kai’s face is really swollen from the mucousitis. He keeps his mouth open like that because it’s too painful to swallow.
Kai stopped being able to talk, couldn’t swallow, and he had a very hard time breathing through all of the mucous. There were sores down his entire throat and he actually vomited up some parts of his esophagus at one point. Was definitely a scary time when he started puking up blood. The only thing that we could do was give him an intense amount of morphine to help keep him comfortable during this time and until his immune system started to come back. Even at the highest dose of IV morphine that Kai could get, he was in so much pain that we had to give him something on top of that called Ketamine. This was a pretty tough time for him, and for us to seem him like this.
Last Friday, we saw some blips in Kai’s white blood count which signalled that the marrow was starting to engraft. This means that the new stem cells were building new marrow and stating to push white blood cells back into the blood stream. These white blood cells aren’t considered “immune” system cells, but it was a first sign that things were happening.
Just today December 23rd, Kai got his first sign of immune system cells (neutrophils). He’s feeling much better and for the past day or so he’s been able to come off the Ketamine pain drug, and is starting to be a bit more like himself. The mucousitis is still there but we’re optimistic that the sores are healing. His breathing is a lot better now as well, although he still sounds like Darth Vader.
Kai is showing some signs of engraftment as he has some rash on his body, but we won’t know for sure if the transplant worked and whether the marrow is from the new stem cells, or his own immune system recovering. Hopefully by mid January he will be ready to get that test, and to also test to see if the Leukemia is still clear.
The main thing here is that he is getting better and there are signs of engraftment of the new marrow. He’s feeling a bit better each day and we couldn’t be more happy about that. Kai getting neutrophils today was an early Christmas present for us.
The next few weeks are going to be interesting as a lot of things can happen when the new immune system starts to build in strength. He’s on a ton of drugs right now. Here is a picture of the machines and the ton of lines that are feeding meds into his bloodstream.
The maze of machines and lines keeping the medications going at all times.
And here’s a picture of Kai using the suction to help suck out the mucous in his mouth. He’s feeling a lot better in this picture as it was just taken today. He’s quite puffy and swollen in the face due to the mucousitis.
We got a smile while he played with his suction tube that we use to help him keep his mouth and throat clear of mucous.
That brings you up to speed on how things are going over here. We will be on our own this Xmas as we’re on isolation, but we’ve got lots of presents and things for Kai to open on the 25th. Santa definitely will be making his way to our little transplant room at BC Children’s Hospital!!
We wish everyone a Merry Christmas and Happy New Year!