Tuesday, December 10th
We have enjoyed being home the past week! Avery has felt pretty good despite some nausea and stomach issues. She is still pretty weak and tired from spending the past month in a hospital room, but we know her strength will return later.
Friday(12/6), we returned to Clinic 8 for labs. Her blood and platelets were all stable, and her ANC had only dropped to 2600. This indicates that she is fully recovered from Cycle 3. Her potassium and phosphorus levels were both still high despite not being on any supplements. They did a urine test to see if there were any underlying factors that could be contributing but everything came back negative.
With Avery's counts holding, we continued with our annual tradition of riding the North Pole Express to see Santa. We have been going every year since 2013 when Avery was just a few weeks old. We Cloroxed our seats and used tons of hand sanitizer, and it was totally worth it to see the excitement from all 3 girls. Avery even let Santa get close enough to talk to her this year! Before Santa moved on to the next family, he told Avery he was going to pray for her(and it was about all any of us could do to hold it together).
We will be admitted on Wednesday afternoon for a day full of scans and test/procedures on Thursday. She is scheduled for a brain MRI, a spine MRI, a Lumbar Puncture, and a bone marrow aspirate. The first 3 are to check the progression of the disease and its response to treatment so far. The bone marrow aspirate is to check her CD34 level in the bone marrow to determine if it would be beneficial to do a bone marrow harvest since stem cell collection through pheresis was not possible.
We should also learn what are next steps are in her treatment plan since so much is up in the air at this point. There is a very good chance that we will be inpatient for Christmas. Selfishly we would all love to be home and enjoying Christmas as a family, but we ALWAYS have to ensure that we are putting Avery's best interest first. We will do whatever it takes to ensure that Avery gets to spend many more Christmases at home.
Please pray for:
- Clear scans and LP
- Good results from bone marrow aspirate
- Wisdom and guidance as we determine next steps in treatment
- COMPLETE healing for our sweet baby
So glad you made the trip to see Santa. I know that was a much needed tradition for everyone. 💕 my love and prayers for all of you. 🙏
Praying specifically as you have requested. Praying for your entire family to remain healthy & strong as you faithfully take care of this sweet baby!
Believing God with you. Healing angels minister to sweet Avery, in Jesus name!
Praying.
We serve an awesome God! He has allowed that angel time at home, a train ride with her family, and some good family time with love and rest in her bed! I dread the things in her future, but I know that HE is already there, and HE has this! You have helped not only yourself with this journal/blog, but let me tell you that I get up every day and pray for her, for you, the sisters, and for Shon; then I know that I don't have a care or problem in this world when I think of your baby. You are a very strong person; I can't imagine what you have been through or what goes arou…