OK! I am back and I am free of anger towards the very being of technology. So, I figured that this is a good time write! Since I have thoughts overflowing from my head on what I need to tell you, I will just add bullets and make a beautiful list of what is going on with us. Lists make me happy, so let's do it, shall we?
* We are in rest time between phases, but the next phase is maintenance. This is what EVERYONE says to make it to. The doses lighten and become a regular routine. So, her body is not in constant shock of high dose meds kicking the cells and killing the cells and kicking them some more. But, I can't say enough how tough EG is. She really tolerated it all with such grace and strength. She doesn't know how strong she is, not by a little. I tell her daily that she is a warrior. A bad a$$ warrior that can tackle anything. I don't know if she is hearing me, but I will be an echo in her mind for her entire life because I say it often. Or atleast that is my goal.
* EG is a pre-B, low risk case of ALL. This is fortunate for us because it is based off age and her genes. She has the "good" ones that respond the best to this cocktail of meds. I have only met one other kiddo that is low risk, so we feel lucky that she was a fit for this. What does it mean? Well, she has 60% less meds during maintenance than a standard risk. That is HUGE. She will be on a 3 month cycle. She will start the first day with a lumbar puncture (spinal). This is where they inject meds (methotrexate) into her spine and she has one other chemo (Vincristine) *all way lighter than what we are used to. She will kick off the 3 months with 5 days of steroids, as well as taking one pill a night (MP-6) for the rest of maintenance. This will go on until October of 2019. But, this could be WAY worse, so we are happy with this course of treatment.
* Her hair is coming in SO fast. She is about ready for a shaping of her do. I am so excited to see my crazy hair growing out too. I know it is just hair, but we are ready to apply spring fever and see it as a rebirth of life and health.
* School begins in April and dance starts TONIGHT! She is so excited and I am too. Normalcy is making me a nervous wreck. I spent so long keeping her safe and in my nest of cleanliness and now she is to go be a real person and thrive in the world around us. My momma heart is being challenged. But, I try to keep it hidden from her because I want nothing but confidence to ooze off of me for her to vibe on. Reentry to the world is a little more tricky that you would think. Life is not worth living being afraid. We will push through and give it our all. I know we will shine through over the next few weeks. Ugh. There is a twist at every turn isn't there?
Coming up is my new job opportunity. For real guys. I get to join the world too. My heart pitter patters for so many reasons. I can't wait to share my new journey. :))))))))
This weather is my everything.
-Until next time.
Jenn
No comments:
Post a Comment