Kai turned 3!
It has been some time since I’ve jumped on to update. I have tried to keep up with his Instagram account, which seems to be the easiest go-to.
On July 1, Kai turned 3. We are overjoyed and he is doing well. I last wrote in March (!!) and we had a clear scan in January. We had a scan again in May that looked good. They noted his ventricles had decreased in size rather quickly but they didn’t seem overly concerned. It’s the direction they wanted them to go, just a faster change than average (based on the January scans)
What does this mean? It means, mom has to watch closely for some of the same symptoms we noticed when he was found to have hydrocephalus (dangerous increasing of the verticals due to fluid buildup in the brain) His programmable shunt has been set to 4 since we left the first hospital when he was 7 months old, and if too much fluid is being pushed out now, then he may experience scary symptoms, such as severe nausea/headache, sudden lose in mobility, lethargy, etc. and will require an adjustment to his shunt setting, to manage the drainage and get things back to a good place. So far, he seems ok.
He experiences some good days and some not-so-great ones. It continues to be tough at times to differentiate between “typical” toddler behavior and actually something medically wrong. ie. fussiness, unsteadiness, decreased appetite, trouble sleeping, etc. I do my best and am very much in tune with him, also worried all the time.
He is happiest when he is with his brother!! They are attached at the hip and absolutely adorable together. I am so grateful to witness their growing bond.
We go to CHLA once a month for port flushes, he has become somewhat accustomed to them.
He absolutely hates being in the car (unless his brother is there to entertain him) so that’s a tough drive for me. It tends to lead to massive fits and then vomiting.
The only medication he is currently taking is the cannabis we started more than a year ago, and we continue to believe this is helping to keep the tumors at bay. My wish is that our government would decriminalize marijuana and start clinical trials ASAP to give more tools to the cancer fight.
There is an extraordinarily kind dispensary owner in Santa Ana (Kannabis Works) who helps us with donations of his RSO, which would cost us close to $400 a month without this help. She also supports our veterans with the same SB-34 CA bill that helps alleviate the financial burden on patients who benefit from the magic that is medical marijuana. We get his CBD from Mariams Hope who also provides us with a generous discount.
Our family is forever grateful for the community that takes care of our Kai. Nuero Oncologists, Nuero Surgeons, Physical Therapists, Occupational Therapists, Speech Therapists, Child Life support (daycare, we love our Ms. Irma) I could go on and on. Simply because he is not on active treatment, doesn’t mean things go back to normal in all cases.
He continues to receive PT, as his mobility is still very much impacted by the many surgeries on the balance and coordination area of his brain, the chemotherapies, and the radiation treatments he has received. He needs assistance climbing stairs, getting onto the toilet and going down slides etc.
He will see an endocrinologist who specializes in pediatric brain cancer survival support in November to take a close look at this growth and the impacts of his treatment. We will have waited over a year for this appointment, it’s very much anticipated.
He has 4th nerve paralysis in his left eye from his second brain surgery and may require surgery in the near future to repair it. We have more tests coming to determine our next steps here.
We have scans upcoming in September and if all is clear, he will start pre-school (WOW!!) He is very excited about that and everything Mario Brother the movie related. :)
We continue to follow the progress of treatment options for ATRT and are hopeful. Cautiously so. We are slowly making our way back into some sort of normalcy. I’m back to work part-time (working when the kids go to sleep) and I’m thankful for that income. I’m tired, but that comes with the territory. Whatever I can do to help. Chasen continues to work very hard to give this family everything we need and more. Cruz is thriving at summer camp and is excited to start 1st grade in the fall.
Our extended family and friends never miss an opportunity to snuggle Kai when they are close by.
We hope this finds you and your family well. We encourage extra special kindness and extra hugs and love whenever possible.
We are so grateful for the continued love and support that this community brings.
ONE LOVE.