It’s been awhile since a

Blog post. We are halfway through cycle 5 of 8 and so close to the end, of Cooper’s treatment protocol. while still 4 months away, it’s the final countdown and I can’t help but going, “yes! We are FINALLY done.” “Chemo will be over, we can go back to regular life.” “It will be like it never happened, we will just move forward.” Here’s the thing with it though, there is no going back to “regular life” this is something that was difficult for our whole family, and it’s not something we will just, forget and move on from. It will be apart of us forever. I am sure, at least for a little while after, sniffly noses, headaches, regular kid things will cause a small moment of “ what is this really?” But hopefully that will calm down eventually. Knowing the truth and the medical aspect of what we are dealing with, it was still in my mind that end of chemo/port removal meant we were done. Here’s the thing though, for Cooper, we don’t know if it is the finish line or just a rest stop. Having NF1 with the tumor he has, it’s really rare, ONE in a trillion chance of getting that NED ( no evidence of disease) the tumor never fully goes away. The point of Chemotherapy and the treatments that are done in cases such as a hypothalamic/chiasmatic Glioma is no to shrink it (though if it does that’s exciting and wonderful no matter how much it shrinks) and not to get rid of the tumor, because again that is next to impossible. Treatment really is just to maintain stability and stop the tumor from getting bigger and causing issues. For cooper it’s done just that. We saw shrinkage, it saved his vision, and it hasn’t grown, but the tumor has not shrunk more since December and chances are it won’t. Once the treatment cycle is done, and the tumor isn’t causing symptoms, you monitor it and hope it doesn’t start to cause issues. If it does, they come up with a new treatment plan and start it all over again. So, we don’t really have a for sure way of knowing. We may take his port out in November at the end of treatment and that may be it, finish line. His tumor stays stable he grows up healthy, and there is even a chance that the tumor disappears on its own and he never needs treatment or intervention again. “One and done” with chemotherapy. Then there’s the chance (which is what statically happens) 6 months, 4 years, 10-20 years, down the road it causes issues and he needs treatment again. The only other options being this chemo regimen again (which more than likely won’t work a second time) , harsher chemotherapy drugs, or

MEK Inhibitors which are, at this time trial drugs still and while they are an approved treatment plan, showing promise, there

Is still not a whole lot we know about them.  So it could be just a rest stop when we

Reach the end of his treatment protocol. There is so much more that goes into it than just stopping and being done.

He will still have every three month appointments for at least a year, he will still have blood draws and MRIs. There’s a chance his brain tumor won’t grow, or cause issues, but he can develop issues from chemotherapy or just from NF1. There are so many unknowns. That I could spin down a rabbit hole (and I have maybe once or twice.)  So we will continue to celebrate. Celebrate today that there are only 14 infusions left of this protocol, celebrate being halfway through cycle 5 of 8 (only 3 cycles more after this!) celebrate that Cooper has done well, and has had minimal side effects that have been simple to control. Celebrate the fact Cooper is smart/intelligent and otherwise healthy. He scored above average on his Cognitive testing that they said we should get an IQ test to see how smart he is and to see if once he’s in school he can be in gifted

Programs. We will celebrate Gracie and her being just as intelligent(hoping to get the IQ test on her too my photographic memory girl) and her being healthy and compassionate and an amazing gymnast. Not to mention turning 8 soon! We will continue to celebrate life, and of course come November celebrate being done with the protocol. Then, we will take the moments, continue to celebrate the little victories, continue to pray, HARD. And continue to trust God and know that he has a plan for Cooper, for Gracie, for our family, and while we can’t see the bigger picture yet, he can and it will be beautiful. Just sometimes…. Sometimes the journey, and the realization are a little tough. Today the realization was tough. It will all be good in the end though. So tonight we go to bed thankful for our medical teams here at home and In Colorado, and we pray, we continue to pray that God helps keep our minds and our hearts on the plan he has for us and he guides us there.