Wednesday, April 7th
We had a long day at clinic today. Avery did awesome getting her port accessed and labs drawn. Unfortunately, her platelets were 34(the lowest they have been in 2021), and her ANC had dropped to 890. This meant that she would require a platelet transfusion, and chemo will be held for another week or two.
We reviewed a handful of clinical trials that may be of interest to us. We were able to narrow it down to one possibility that seemed promising... the Modified Measles Virus (MV-NIS) trial. It is available in multiple hospitals throughout the country with Gainesville, FL being the closest location to us. Our team is reaching out to gather more information and provide Avery's history. With her current counts, she is ineligible for any trials right now, but with a few weeks of rest, she may be a candidate for this one. All trials at this point are not curative options, but they could potentially give us months or years of quality life.
We are also looking at adding in CBD oil and Mebendazole into her daily regimen. Both are considered experimental, but there are promising results in the lab with targeting tumor cells.
Our next step is to schedule a lumbar puncture for next week sometime. We would like to see if free flowing cancer cells can be seen in the CSF sample. A positive result would further confirm the disease progression, but a negative result could be possible as well. In the past, Avery has always had negative LPs even though she has had notable metastasis in the spine. So the results may be helpful or inconclusive, but we believe this is the correct next step. Avery will likely require another platelet transfusion before she is able to get the LP.
Her next MRI is scheduled for May 25th right now. This could change depending on if we are accepted on a new trial.
We ended the day with a quick trip to Build-A-Bear. A couple of sweet friends had provided gift cards back in 2019 when Avery was originally diagnosed, and she was finally able to enjoy them. This is only the 3rd or so time Avery has been in a store since August 2019.
Please continue to pray for:
- Improved counts
- Disease stabilization
- Guidance for next steps
- Quality of life for Avery
She is a beautiful little fighter! Praying for her to be on the trial list. Continued prayers for all 🙏❤️
We are praying for Avery and all of you. Our thoughts and prayers are for life quality for all of you. Please know you are in our hearts. God bless bless you in every way.
I pray Avery will be free of pain and can enjoy whatever time she has.
Praying daily for Avery and the entire family thru this journey. Hope she has good results on tests and can get into a trial that can help her along the way enjoy good times. We love you all.
Praying!!