Wednesday, October 21st
Avery had another restful night. She got up once and stirred some during vitals, but mostly slept well.
She didn't require any transfusions today, and her ANC is up to 890.
We headed over to UAB around 9:15 to the Radiation Center. Avery was surprisingly friendly with some of the staff there and even chatted with one of the Drs a little. When we took her back to the room, they already had the Trolls soundtrack playing for her. Unfortunately, the room was rather scary looking and not anywhere we had been before, so when it was time to start everything she was less than thrilled. I managed to wrangle her enough to allow them to push the meds into her line. She went from fighting and squirming in my arms to completely limp in a few seconds. We got her laid on the table, and then i went out to the waiting room. Hopefully this is not the experience we will have for the 30 days of radiation. While she was asleep, they made the mold for the mask she will wear during radiation. It covers her entire head and part of her chest(i think) and will be bolted down to the table to keep her in position each session. They also did a CT scan for planning purposes and made marks on her body to use for positioning during treatment(which she later removed as soon as she noticed them).
When they brought her back to me, she was just waking up and not a happy girl. She immediately jumped in my arms and stayed there for the next couple of hours. She perked up some when we made it back to our room at Children's. She played and even ate a little until it was time for the afternoon Benadryl. That put her to sleep, and she slept until 6pm.
She will begin radiation on Thursday, October 29th at 7am. She will start her radiation at the traditional photon center, and they plan to transfer her treatment to the new proton center as soon as possible. Proton radiation is the preferred method. Instead of using x-rays like regular radiation treatment, it uses protons to sends beams of high energy that can target tumors more precisely and spare healthy tissue. There are only 35 or so proton centers in the US, and we are fortunate that the new proton center at UAB opened earlier this year.
She was received 30 treatments total. The first 18-20 sessions will be full craniospinal radiation for a total of 34gy. The last 10-12 treatments will be boosts to the higher risk areas of the brain at around 54gy.
We slowly restarted Avery's feeds this afternoon. They will work on turning off the fluids and switching her back to the oral sodium supplements once she hits her goal rate. These are all things we have to accomplish before we go home on Saturday.
The rest of the week will hopefully be spent playing and having fun.
Please continue to pray for:
- Continued count recovery
- Tolerance of feeds and sodium
- Avery's anxiety as we go to radiation for 30 days
- Complete healing
That smile just lights up a room and my day. Thankful for the progress made and continued prayers for strength managing through the challenges in the healing process.
Great news!! Glad she had another restful night. Continued prayers to get to go home this weekend and prayers for radiation treatment to not be so bad and stressful for her or mommy. Love the smile 😃 Avery!
Prayers for continued count recovery, tolerance of feeds and sodium, the anxiety to go away, and for complete healing. Prayers that after complete healing the world will have a wonderful citizen who is a teacher, a minister, a medical doctor, a research scientist, or some famous writer of medical journals. God, please bless this precious child with a long and productive life spent in your service. We thank you for Avery's parents and family. Bless them with strength, wisdom, and peace. We thank you for Avery's medical team and all they do for our precious Alabama children. In Jesus name we pray, Amen
We pray for all of you to find the strength to get through the days ahead. That is one strong spirit in Avery! God Bless all of you.
Beautiful LG. Love that smile. Avery you are a strong strong little girl. Avery have I told you about my granddaughter? Her name is Amber. She is 29, lives in North Carolina. She is going to have a little girl November 6 th. I wanted to share this with you because I thought it would put a smile on your beautiful face. Her name is going to be LETTIE MAE. I will send you a picture as soon as she arrives. I love you LG. Spread love all around.