Well, dedicated people of the world that are actually checking back in to this little puppy. I salute you for being here. It makes my little heart happy! I will back track my story to November or so, maybe December. Painting a picture here: I am a walking zombie. This is around the time I am proud of myself for getting up out of bed and showering was on a good day. You catch my drift? I was in survival mode and I was on this Earth to care for my kids and assure EG got the best care, the end. Poor Jeff and poor me because we were not even in my tunnel vision. Not the healthy way to carry on, but it is part of the process. So, you get the picture?
As I drop my buddy R off at Mother's Day Out on his specific days, I am chatting with the ladies I interviewed with over the past summer to get a part time job for this coming year (present year). I had a job as an aide (I just wanted to get over my anxiety of leaving Ryder, so we were going to do it together as my journey to healing). I never got to it because of E's August diagnosis and called them first hand to tell them that I had to back out and fight this battle. They were SO kind and loving and wrapped their arms around me to help take care of my baby boy while I tended to this other thing going on. Forever grateful on that one.
Skipping back to November again, there is this awesome lady who saw me at my lowest and really "saw" me. We slowly began to know each other with my daily drop off trips and such. She approached me and said she wanted to meet and the ball got rolling. We clicked and had visions and meshed to a perfect unison. Starting in the summer, I will be working as an assistant director at the Mother's Day Out. EKKKKKK. It is a part time gig and I will be back with my dude and I will be available to take in E when needed and get the bigs from school. I hate to say it in fear of throwing it off kilter...but I am SO excited!
So there you have it. A pretty dang good post on us and I am soaking it in. Just like this weather and sunshine. Soaking it in every inch of my being. I will update on how maintenance and school is going soon. Big things going on! How about you? What's new?
Until Next Time
-Jenn
Monday, March 26, 2018
Wednesday, March 21, 2018
New Normal...
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
* 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
Tuesday, March 20, 2018
Praise the Lord...
I HAVE just spent the last 30 minutes trying to undo the connection that my blogger account has to "Jeff's Action Research" blog done in his graduate years. I have NO clue how we got wrapped up, but I finally found a device that let me write on MY blog. Steam....is oozing out of my ears. But, now I can breathe and lo and behold, I have to pick up N from talent show practice. SO. My long lost, not action research blog, I must retire to go get my child. I have so much to tell you. I have been holding my breath for this LAST round of heavy duty, kick yo' booty meds, but we made it.
MAINTENANCE BOUND FOLKS! This is huge and I will be back to explain it all and give the lowdown on what our new normal looks like. I can't leave y'all here after this far into it. I will be back with fresh fingers and a lot less steam!!!
Off to be in the beautiful sunshine. Join me:)
-Jenn
MAINTENANCE BOUND FOLKS! This is huge and I will be back to explain it all and give the lowdown on what our new normal looks like. I can't leave y'all here after this far into it. I will be back with fresh fingers and a lot less steam!!!
Off to be in the beautiful sunshine. Join me:)
-Jenn
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