Ava’s Journey

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Ava’s Journey Ava’s fight against B cell acute lymphatic leukemia. Follow along as we navigate a new normal.

This battle will take all the prayers and support possible. ❤️‍🩹💝🎗️🎀

Clinic number….😮‍💨…Wednesdays used to be our day of just chill after school, no workouts, no therapies, no anything; now...
13/05/2026

Clinic number….😮‍💨…Wednesdays used to be our day of just chill after school, no workouts, no therapies, no anything; now it is a go, go, go day. Nonetheless, today was overall a positive day!
First, Ava - the next 28 days will consist of chemo by mouth, 3 spinal tap chemos, and 2 infusion chemos. While this is a lot, we are now considered to be in consolidation, which is the next phase of the fight! Sis is responding in a positive way, and that’s the best we could ask for. As of now, we know that she is blast-free at 0.01!!! 🙌 We are waiting on 2 tests to verify our path for the next 2+ years. Until then, we are celebrating these wins! Thank you, DoorDash, for keeping our baby girl hydrated with her shakeys and tummy full of fries after a long day of NPO!!
Sawyer - I need to show some love for this bright, sweet boy ❤️. He got too many awards to name individually, but all As, reading awards, and a Spotlight award. He has overcome the chaos of home and the constant schedule changes. I pray that he never stops being a beacon of kindness and joy 🥹.

If anyone needs me, I will be here playing playdoh with this girl for the 10th hour straight! 😂 We need a playdoh machin...
10/05/2026

If anyone needs me, I will be here playing playdoh with this girl for the 10th hour straight! 😂 We need a playdoh machine that makes perfect balls bc that’s all she uses me for. Won’t even let me touch the playdoh toys. “Mom, your job roll ball!” 🙃❤️

08/05/2026

So Ava had to have some repeat labs ran today which she was not a happy camper, but they solved the mystery of the soreness she is having. P**p 💩!!! Lots of p**p! I really do not know how this is possible looking at the amount of diapers we have changed, but girl just ain’t getting it out!! They will continue to watch the bilirubin and sodium for liver toxicity especially as we move into next week. This can be common with the chemo.
Side note before we continue….just bc the tests say blasts that does not mean all bad blasts 🫣😮‍💨🫠! I had a slight panic reading some results and ends up those were not important to them anyways 🙃!
🥁 We also got preliminary results for the MRD. If my interpretation and ChatGPT are right, they did not see any leukemia cells to the 0.01!!! 🙌🤩😍❤️🙌 Huge news but now we wait till Wednesday to get the official announcement from the oncologist, and until then we will be pumping some miraLax! If you need us we will be arm deep in changing diapers, send hazmat teams!! 😷💩

06/05/2026

LP and bone marrow aspiration are complete. We have already made it home! Results will take some time as things will be checked and double checked and sent off to other labs around the US. EPOR study is being rushed, so they are hoping to have that next week as well.
I thought for sure we were going to get a week off 😮‍💨, but that is not the case. Oncology hopes to move forward with the next phase the 13th. Unfortunately, this will require an inpatient stay 🥺. For how long will be determined by her response. The only way this would be pushed back is if her neutrophils tank.
We are torn between wanting a week off to enjoy Sawyer’s last week of school and ceremonies or dividing to conquer. Regardless, things will work out for the best.
Ava did decide to make the clinic record for the amount of propofol used for sedation. Even then girl did not want to give it up, so they added some ketamine to give her a push. Instead, Ava just rambled the whole procedure, but was very still and good! 😌 Now the waiting game! ⏰

Tomorrow is a big day. Tomorrow is day 29. Tomorrow is her MRD. Please pray the results are 0% for abnormal cells. Pleas...
06/05/2026

Tomorrow is a big day. Tomorrow is day 29. Tomorrow is her MRD. Please pray the results are 0% for abnormal cells. Please pray that the EPOR rearrangement comes back negative. To say I am scared is an understatement. So much hinges on these results. Her next steps. Our next steps. I have held her hand tonight and watched her sleep. She is tired, her little body feeling the effects of the chemo and steroids. The past 2 days her gait has become stiffer and struggling to keep balance due to all the weight and lack of strength. She laughs and says “I’m chunky” when she is hungry. She gives me sweet kisses on the cheek as I carry her up and down the stairs all night. I am thankful to some degree that I took strength training seriously! We would carry her anywhere she asks. Soon I will wake her so she can have her last bite to eat till after her procedure tomorrow. Please pray, send good vibes, or whatever for Ava. Pray for steady hands, a brave heart, and the best results. Thank you! 🙏 🎗️🩷

Shout out to Zip With Us, Inc for the amazing shirt for east port access! It is such a blessing not to fully undress her...
04/05/2026

Shout out to Zip With Us, Inc for the amazing shirt for east port access! It is such a blessing not to fully undress her for every appointment leaving her more comfortable and less stressed!

These numbers!! 🙌 Steroids and not just a small dose, but a double dose of heavy steroids for almost 30 days. We have se...
04/05/2026

These numbers!! 🙌 Steroids and not just a small dose, but a double dose of heavy steroids for almost 30 days. We have seen numbers in the 130s and 150s. There were days I spoke with the nephrology team on what to do and how to give BP meds to a 2 year old. And if anyone is wondering insurance does not pay for the liquid version because well everyone can just take a pill 🤨! Anyways, after almost 30 days of attempting to bring her out of hypertension, we have finally seen the work!! 3 more days of induction! Let’s Go!! 🙏🎗️🙌🩷

29/04/2026

Clinic…dreaded days, but today was swift and smooth. Numbers came back great so no transfusions!
Chemo done ✅
nephrology ✅
Now home resting! 😌
7 1/2 days till day 29! This will be a big day with MRD! Praying for another great week of progress 🙏🤞🎗️💝

“It’s just hair, it will grow back.” I have heard, and sometimes still hear, this statement. It was, and still is, such ...
29/04/2026

“It’s just hair, it will grow back.” I have heard, and sometimes still hear, this statement. It was, and still is, such a trigger for me. A reminder that my baby has to lose a sense of identity in this awful battle. There is not a place we have gone where people have not gushed over Ava’s blonde curls. She finds it so funny when it becomes a full p**f because of the humidity. More and more, she has become aware of her own hair. Now she wants me to spray and brush it. Lately, Ava has asked me to put it up in a ponytail. Those blonde curls may not have stayed forever, but they should never be lost the way it’s going to happen. I noticed last night, as I was combing her hair, small pieces beginning to fall away, along with some patches missing. To some, it may just be hair, but to me, it is special. To me, it is a part of her personality. To me, it is a feature that is special only to her. To me, it is a bond that has started to grow between us. Now, it is a painful reminder of what is happening to her little body. ❤️‍🩹🥺🎗️

The term 'invisible kid' refers to siblings who often take a backseat in life when their brother or sister is fighting c...
28/04/2026

The term 'invisible kid' refers to siblings who often take a backseat in life when their brother or sister is fighting cancer. Upon receiving Ava's diagnosis, my initial heartbreak was for her, but my second concern was for our oldest child. He possesses a remarkably loving soul, and I witnessed a part of him fade when we explained Ava's illness and the fact that she wouldn't simply recover soon. We endeavored to be delicate with our words, but it was evident that he was wondering where he would fit in. I am aware that I cannot put his life on hold solely because we are attempting to save his sister's. He needs to experience and engage in activities that bring him joy. Fortunately, he is extremely adaptable and content to stay home, explore, and discover new things, such as finding frogs 🥰. Moreover, we are fortunate to have friends who have offered to take Sawyer on adventures and engage in activities that are currently not feasible for us. Justin and I will never be able to adequately express our gratitude to everyone for their unwavering support. Thank you for not forgetting about the invisible sibling….🥹💙🩷🎗️

23/04/2026

😮‍💨 what a day…just when you think it’s going to be a low key clinic it turns into chaos and then some good laughter.
Ultrasound on kidneys was good! They did not see anything alarming.
Ava had to have RBCs today due too low counts and it would just put her at an extremely dangerous risk for immunocompromised with the chemo. So we did chemo first, then came the 2 hour transfusion. Not sure if it was exhaustion or a reaction but Ava got super flush and just not acting like herself. Before we knew it there was about 10 people in the clinic room getting to work. After some Tylenol and Benadryl, Ava became talk of the clinic. Lots of laugh were had with the random things she was saying along with asking the nurses if they needed to p**p or when they got there. My favorite is when she looks at her hands and says hey look at my hands! 😂 Ava then looks at the nurse that has been with us like all day and goes umm who are you 💀! Everyone got a great chuckle out of her all serious questions and randomness. It was a relief! 😮‍💨
They decided to call off the rest of the transfusion and start the Rocephin due to an ear infection. Our NP came in and said she felt good sending us home. 🎉🙌 I think we ran out those doors 🤪!
Ava is resting and overall doing good after the long day. Thank you for all prayers!

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