Wednesday, September 16th
After Avery got done fussing with the way the IV Benadryl smelled(go figure) last night, she fell asleep. She stirred a little during midnight and 4am vitals, but otherwise she slept well.
She didn't require platelets or blood transfusions today. Her ANC is up to 430, and her sodium is remaining stable with the current supplements. We decreased her schedule pain medicine to every 6 hours with the goal of slowly weaning her. Tomorrow is her last dose of IV Cefapime. We had discussed the possibility of going home tomorrow, but those plans have since changed.
We met with our neuro-oncology team to review Avery's latest MRIs and discuss the next steps. We have decided to do another round of chemo which will start next Wednesday, September 23rd. Tomorrow or Friday, Avery will be getting a g-tube placed. This will keep us in the hospital likely through the weekend, but we are hoping to get one or two nights at home before starting chemo. The surgery team will be discussing her case in the morning to ensure they are all in agreement since she is a higher risk case. We all believe that this is the best move for Avery and will improve her overall quality of life during treatment.
Given the issues Avery encountered the last cycle, there will be extra close monitoring in place for this round. Due to her SIADH, there are discussions on whether her chemo will be administered in the Special Care Unit or the PICU. Dr. Friedman said he tries to avoid using the term "highly unlikely" with us, because Avery continues to set the bar high for uncommon and unexpected complications. She will get repeat MRIs 3 weeks after the start of this next round. The hope for this round is to continue to shrink the tumors and disease and give more time for radiation planning.
Avery had still not gotten out of bed or bore weight on her right leg since last week. Physical Therapy came by to try and encourage her to get up, but that was a total disaster and caused a major meltdown. She finally got out of bed for me early afternoon and has walked to the bathroom solo at least half a dozen times today. She has been battling constipation as well(from the pain meds). All of the doses of Sena and Miralax finally took effect, and she was able to get some relief.
After the events of the morning and a quick afternoon nap, she woke up a new child, We played Legos, did crafts, and played with Floam. It was so good to see that side of her again!
Please continue to pray for:
- ANC to continue to rise
- Safe and successful surgery for the g-tube placement
- No illnesses or infections
- A couple of days at home before we start her next round of chemo
This all sounds like it is good news; I am glad you will get a visit home before the next round of Chemo, and I am so happy that she is feeling better today!!! God bless you all; prayers continue and I LOVE that sweet girl's beautiful smile!
Prayers for everything asked for and needed in order for Avery and Mom to spend some time at home with Dad and the girls. This amazing family needs Time together to regroup before the next round of chemo!!!! Thank You for all You have done and continue to do for this precious child. It means so much to all who are Praying for this precious family. We ask these things in Jesus precious name, Amen!!!!
So glad she is feeling better! Praying.!
Love that huge smile with our hero trying to be incognito with those glasses. Tell her I still recognized our hero. Good luck with tube and no infections. Hope you get to go home a few days but for things to go as planned on new chemo treatments. Love you! Aunt Phyllis
I love this glasses!