Wednesday, March 24th
Despite the added steroids, Avery's nausea and vomiting continued to get worse following our last clinic visit. She began waking abruptly at 6am every morning vomiting and even battled with it some during the day. On Monday, March 15th our team advised us to head to the ER to rule out a shunt malfunction. Avery fought hard on the X-ray and fast sequence MRI, but she did perfectly on the head CT. This allowed them to rule out any shunt failures or increase in ventricle size. Our team advised us to give 4mg of steroids daily and begin decreasing every few days. As soon as she started the larger dose of steroids, the vomiting completely stopped as well.
We were able to decrease to 3mg/day pretty quickly, but when we went down to 2mg, she began complaining of random headaches. We are going to try and decrease again in a couple or days. We also had to start back with daily omeprazole to protect her stomach while on steroids. While she is feeling much better with the nausea now under control, her overall energy and demeanor seem a little off from what we would expect.
We went to clinic today to receive her next dose of chemo. Her platelets were 89 which was up from 2 weeks ago, and her ANC was 5000(which is a result of the steroids). These numbers gave us the green light to receive Irinotecan and Avastin today. Avery did excellent getting her port accessed and was talkative and interactive for a while. As the morning and the waiting went on, she got tired and her mood swung in a bad direction. By the time it was time to hook up her line, she had a full blown meltdown which was no fun for anyone. She wore herself out fighting and managed to sleep for over and hour and a half. She woke in an OK mood for the last 15 minutes of chemo and to be de-accessed. Unfortunately, when she was de-accessed, she began bleeding from her port site much more than normal. She was soaking through gauze and fighting tooth and nail to keep the nurses from applying a pressure dressing. Luckily she(without any assistance from us) was finally able to get the bleeding to stop, and we were able to go home.
Thankfully, we were able to shake off the bad day playing in the Cahaba and taking a long walk/stroller ride in the beautiful sunshine
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Avery's next appointment is Monday, April 5th for her full brain and spine MRI.
Please continue to pray for:
- Improved or stable scans on April 5th
- No more nausea or vomiting
- No more headaches
- Protection from germs and illnesses
Continued prayers for Avery. Praying for great results on April 5th. God she needs complete healing.🙏🙏🙏
Hi,
And I know playing in the water and a fun stroller ride was more fun than being at the hospital! My prayers are with Avery every day as well as her sisters, mama, daddy, and grandparents. She is the bravest girl I know, and maybe now with nausea and vomiting better, she will feel better very soon! I ask for all on your list as well as rest and peace with healing for your baby girl!!!
Dana
I had Avery on my mind heavy last night. I continue to pray for this sweet little girl.
I'm continuing in prayer with you and all the others praying for Avery. Believing God for a complete healing starting with improved scans on April 5th, no more nausea or committing,
no more headaches and protection from germs and illnesses.
Rejoicing in hope, patient in tribulation, continuing steadfastly in prayer. Romans 12:12 ❤️
Praying for Avery! Improved scans, no more nausea or vomiting, headaches and protection from germs and infections.