Team Ada

No more being connected to Tubie! We are officially done with Blina block 1. We celebrated not having to be connected to a Tubie by going swimming!

After we got labs done and disconnected from Blina we had to go get an echo of Ada's heart. During the next phase of treatment Ada is going to be a really harsh chemotherapy that is often called the "red devil". This chemo could cause cardiotoxicity and they wanted to see what Ada's baseline was for her heart.

Some scary stuff for a little girl.

We had physical therapy today. Ada really enjoys going to it and on the days she feels well enough I'm glad we can go.

Yesterday, we had a call from our nurse navigator saying that we have to get an echo of Ada's heart at her next appointment because the next cycle of chemotherapy they know can cause some late term effects on the heart.

I'll be honest, I had to call my mom and break down and cry about how hard it is to hear that. How Ada should be having a normal summer, learning to swim, being with her friends and enjoying childhood but instead we are making appointments to check on her heart.

Childhood cancer is a marathon, not a sprint and almost every day feels like a battle that we are trying to win for our daughter. Our main focus is Ada and Conrad and that is all the energy that I have is for them. Some things are just going to have to wait.

We had a clinic visit to change out Ada's needle for her port. It definitely doesn't get easier and Ada knows as soon as we put our masks on that it's time. This time was extremely hard for her and us as her parents to have to physically hold her down with her screaming at us to not hurt her.

Bryan and I are trying to maintain a positive mindset but it's hard when you have to see your child suffer so much and get a glimpse of normalcy just to be reminded that our lives are hospital visits, masks and being cautious of things you normally wouldn't be cautious about.

We have one more week of blina and then we go into a really intense part of treatment.

Poor Ada has been up since 2:30 this morning with ear pain. We spoke with her doctors and they told us to go to urgent care and she has an ear infection. We got some antibiotics but we are tired.

Clinic day. We chatted with Ada's nurse practitioner and had to change out Ada's needle. Which never gets easier. Lots of tears, including some of Conrad's because it was nap time and Grandma couldn't come this time. We picked up some new medication and headed home to meet with the home nurse to change out our bag. Ada says her backpack is her baby carrier.

Shoutout to our neighbor for picking up our medicine since they dropped it off an hour early! We love Deb!

Thanks Bear Necessities Pediatric Cancer Foundation for the sweet ride! 🧸 The best bear hug!

Before our long inpatient stay Ada got to play with some volunteers in celebration for May the Fourth be with you! One of the directors from Ronald McDonald House in Madison sent me this photo ✨

Well 3/4 of the bridges are sick ☹️ Conrad and Ada were puking yesterday and now Bryan has it. Luckily we should be good to not have to go back to the hospital as long as we keep fluids in. Adas had a couple of bites of spaghetti.

Ada was so good taking her daily meds but since she had to take so many at the hospital it's been a fight to get her to take it. Hopefully with a break from having to take multiple meds a day she will get back to not crying and fighting.

let's break out of this joint

We are over being in the hospital. When we first were told about our planned admission we were told that it would be an easy thing, that most kids fly through it and that we would only be here for 48, maybe 72 hours. Now we will be here for a week.

Both the kids are over the "hospital hotel" and Ada doesn't understand why she can't leave the fourth floor. She's frustrated. It's even more frustrating because she is starting to feel more normal. And it's hard to not be together as a family every night for when Conrad and I have to leave.

We know that the medication she's getting is supposed to help her and is an amazing breakthrough for child hood cancer but it's still hard.

Hoping to keep everyone sane this weekend. Keep sending positive vibes/prayers.