What we are learning
Our kids deserve more than the 4% of the funding that they get. Our kids deserve drugs that don’t destroy their bodies and that are made for them, not for adults. It’s sickening how we are failing them and there is no reform in sight. We should all be 1. educated and 2. disgusted enough to push for action. Please join me in signing this change.org petition for change Call for Pediatric federal funding increase
As we continue along with this terrible nightmare, we are becoming more aware of the lack of funding, research, and options for this cancer, for our kids. Our family and friends send us articles and reports of many wonderful therapies out there. Unfortunately, because there are no studies existing that allow us to try drugs that exist but have not been trialed on children yet, my son may not make it. I spend my days juggling the kids and doing research on behalf of Kai. In order to properly advocate for him. I write press releases that go unanswered. I cry and cry and cry. Then I pull myself together and start living again.
This is a very different way of life than I’m used to. Before Kai got sick, earlier this year, I worked. I worked for a wonderful company with a really great group of talented and driven people. I cared for our kids but I also had some time to ‘myself’, even if this just meant work. This is no longer the case. My one and only job are the kids. Especially Kai, but also Cruz. And I love them dearly, but they need more and so do I. But, at this moment, it’s not in the cards for Kai or me. It’s my job to make Kai feel safe and happy and to advocate for him like the mama bear I am. All moms out there can relate, I’m sure. Obviously not to exactly what we are going through, and I’m grateful for that, but to the primal instinct to protect and fight for your child no matter what the cost. And my heart breaks that I’m without the ability to save him.
This is to say, we are lucky right now. We have a kiddo who is tolerating the medicine they are giving him and so far, his tumors are not attacking his body in harmful ways. The problem is, this cancer, these tumors are like ticking time bombs. And that is so hard to forget. It’s so hard to stay present and live a “normal” life while navigating the absolute terror that is our reality. Yet, we must persist in this way. For our family, for our well-being. We work towards it, daily.
We see trials out there exploring using different viruses to attack cancer, yet because Kai has not received all of his vaccinations, because he got sick at 6 months, he is not eligible nor are there trials open for him at the moment, even if he were. Killing Cancer
Studies using mushrooms and cannabis, but with one of the drugs he is currently on, Avastin, there are studies that say that might be dangerous for him to start that kind of natural therapy.
Using different chemo drugs that have been studied and have shown promise for his exact cancer AND subtype of his cancer, but it has not been trialed on kids so it’s not available to Kai at the moment. Gemcitabine (chemo) for ATRT
Our goal is to have as much time with Kai as we can. The doctors seem to think we can not cure him, but of course, we hold onto hope.
We await the Car-T cell immunotherapy at Seattle Children’s and hope we can get there and it will work. We are on a waiting list for Brain Child 3, and they only take 4 kids per month. The longer we wait, the more worried I am. We just got pushed to December (we got on the list in July) and I would not be surprised if it keeps being pushed. Crushed. Car-t-cell Immunotherapy