Wednesday, September 4th
We met with Avery's neuro-oncology team today to discuss the most recent test results and to discuss her treatment options. As I mentioned in the last post, the cancer has spread to areas of her spine which is common with medullablastoma. The LP(lumbar puncture) actually came back clear which wasn't really expected given the MRI results, but it doesn't have much bearing since we know it has spread. We received the results back for the subgroup, and Avery fell into the Group 3/Group 4 subgroup. The subgrouping along with the fact that there is metastasis in the spine classifies her as a High Risk patient. This essentially means that there is a 50% prognosis for full remission of the disease with no re-occurrence.
Next, we discussed the options for treatment. After much discussion and a lot of questions, we decided to go with the Head Start 4 Clinical Trial. This is an international trial with roughly 250 participants. It will focus on high dose chemotherapy at first as opposed to the high dose radiation that other studies start with. The effects of high dose radiation in a child at such a young age can lead to detrimental side effects as an adult. If you are interested in more information, you can look here: https://clinicaltrials.gov/ct2/show/NCT02875314
Avery will be receiving one more brain MRI and have surgery to place her port in the next few days. We will be admitted inpatient next Wednesday(9/11) to begin our first of 3 initial cycles of chemo. If everything goes well, we will be inpatient for 7-8 days before heading home. We will visit clinic 2 times for outpatient treatment in the cycle. If her body recovers well and her white counts rise to where they need to be, we will begin cycle 2. This is typically 21-28 days after the start of the first cycle, and will follow the same routine of 1 week inpatient followed by 2 weeks at home. This will repeat until 3 full cycles are finished. After the 3 cycles, the path of the trial will/can vary based on if we get a Complete Response or not.
Our sweet girl has a long tough road ahead of her, but we will be fighting with her and for her the entire way. She is truly the definition of #brAvery.
A sweet childhood friend shared this prayer on Facebook, and it couldn't have captured the way we are feeling any better. I wanted to share here in case someone else was struggling as well:
"Tonight we pray for the momma(and daddy) who needs to know it's all going to be okay. Lord, she has so many situations where she needs You to intervene, but she has one thing that often comes to the surface of her heart and causes her to question if it is really going to be alright. Tonight, we ask that You always work everything out for her good... just because You love her. Quiet every lie that causes her to question Your goodness. Help her believe it's going to be okay. Give her peace. We ask in Jesus's name, Amen." ~Midnight Mom Devotional
Avery, you don't know us, but we just had our little guy go through the same thing you're fighting right now. We have no evidence of disease and used the same protocol you are about to embark on. Here is a picture of our little guy who is being released today after his transplant rounds. It may seem tough looking at it right now, but you can do this!!! Please let us know what we can do to help, even if it is just to talk about everything.
Sending love and big prayers from Louisville KY,
SuperDrew and his crew
Praying for you and your family for Healing and Strength 🙏🙏🙏🙏
Continuing to pray for peace, comfort and wisdom in making medical decisions. Praying for complete healing!
https://youtu.be/8VZ0epKIEXk
My daughter and I would like to purchase a wrist band and wear them in honor of Avery's battle. Can they be purchased and where. Continued love and prayers.