Plot Twist...

Whew... days like today really take it out of me.

Today Cooper started MAINTENANCE! The elusive phase we dreamed of when we first started his treatment 241 days ago (who's counting? 😅). Time for us to settle in here because we are now in this cycle until his end of treatment of February 21, 2027! A nurse told us that a lot of kids take at least a year to get here and Cooper has powered through his treatments in 8 months. Yeah buddy!

Maintenance is a 3 month cycle that starts out with a spinal tap where they inject chemo into his spinal fluid, followed up by 5 days of steroids. Steroids are what have been hardest on his body in the past. They can mess with his blood sugars big time so we have his CGM on and are starting to monitor already. Hoping since it's only 5 days that we won't have any issues! In addition, he also will be taking a chemo pill every day until the bitter end and then an additional chemo pill (actually 10 1/2 of them 😬) once a week. After the three months, he does it all over again and again and again....

All to say, we are relieved to be here and praying his body has time to start recovering and strengthening back up. However, we are also trying to be patient and understanding that he is still getting steady stream of chemo into his body. Slow and patient is not my forte.

What is the plot twist?

Well... as you have heard many times, getting Cooper's port accessed has been SUPER traumatic and has only gotten worse with each visit. So bad that the last one he made himself throw up 3 times even before they accessed his port. Our amazing nurse mentioned that we may be able to get his port out early since it's so rough on him! After many conversations and discussions with his oncologist and with Cooper, BRUNO is getting EVICTED!

Today we went through the whole procedure "pretending" that he didn't have his port in to make sure that his veins were big enough to get the chemo he needed and that they could get an IV in for the procedure. Everything went beautiful and we got a green light from all of the doctors!!

One month from now Cooper will have his port removed!!!!!!!!!!!!!

I feel like he is getting a year and a half of his childhood back. He will be able to play sports again without having to worry about someone bumping into him and breaking his port. He can wrestle with his dad again. He won't have the constant reminder in his chest of his cancer! I have a feeling this is going to be a bigger deal for him than we even realize.

I am praying this is permanent and that there won't be a need in the future to get it put back in. I hate the fears of the unknown but we have chosen to not make our decisions out of fear.

Things we are grateful for and thanking Jesus for...

-Cooper getting to start 4th grade with his classmates! He didn't end up getting into the school that several of his close buddies have moved to. He was sad at first but we've been praying that God would lead the way with this decision and have a lot of peace about it. We LOVE his current school, the only downfall was several of his close friends moved!

-His hair is starting to come back! It's pretty darn cute.

-His hemoglobin is over 11!!! That's back in the GREEN!!!

-He has had pretty good energy lately

-Making it this far... it's been a long road and we still have a long way to go but this is a milestone we are celebrating!!

Things we are handing over to Jesus and praying hard for...

-That his cancer is 100% gone and will NEVER return! I have heard too many stories of relapse in this phase. So, while we celebrate, there is an undercurrent of nerves that come with it. This is my biggest prayer!

-As he starts to enter more into "normal" life again, please pray that his body is protected from all of the "other" germs. Especially going back to school full time! If he gets a fever, protocol stays the same and we have to be back at the hospital within an hour to get him checked out and potentially admitted.

-For protection over our household from the enemy!

-That Cooper's story would bring glory to God and that he can use this experience to bring hope and light to others.

-That Cooper would know and feel on the deepest, most personal level just how much Jesus loves him.

-For God to lead our decisions. So many things coming down the pipeline that we will have to make a choice on and I know who I want to guide those.

Thank you for sticking with us through the hills and valleys of this journey! It's a heavy one and you have NO idea the power and gift it is to have people who are willing to come alongside us in all the messy parts. Your thoughtful gestures and gifts, your encouraging words, your PRAYERS, your check-in's... I wish I had better words but THANK YOU!!! You matter SO much to us!!!

Much Love,

🧡 Cooper's Mama