So proud of my girl today. She sits by herself when she they draw blood in the morning for labs… she says, “I’m a little bit scared”.. I tell her, “it’s okay to be scared, but you don’t have to be, because I’m here with you and you can squeeze my hand if you get nervous. You can do this”. I hate that she has to go through this.
She makes me proud. Not one tear shed today. What a brave little girl!!
Interim Maintanence, phase 1- complete.
We also got to see an old friend, Tobias. Him and his mom brought joy to the entire unit during our stay. He would scoot around the unit on his little ez scooter, and I’d ask him to help me find Amora and Kyle as they’d go for walks. And he’d just zoom on past and say “I found them!”. We played air hockey together and laughed together. Today I got to hug him and he called me his friend.
He’s been fighting pre-B cell ALL (the same disease as Amora) since June 2022. He went into remission and later relapsed. We met him during his treatment fighting the cancer that had relapsed. This boy has been through so much, he is such an inspiration to us. Amora said “I want to go play with Tobi”. “That’s my friend”. Sweet babies.
I’m not sure his mom got good news today. I wasn’t able to talk to her as she walked out of her room with tears in her eyes. Can you please say a prayer for a miracle for Tobi? A miracle that he can beat this cancer? Even when all available clinic trials have been exhausted… please pray that something new comes up, something to help him beat this ugly disease. My heart breaks for his mom. A warrior who has beat cancer herself. It’s not fair. I really hope we get to see each other again, with good news.
Amora starts her next phase of treatment December 5th, called Delayed Intensification. And it is exactly how it sounds- intense.
On the first day, she will have a lumbar puncture with chemo administered in her spinal fluid. She will have vincristine and doxorubicin through her port and she will begin high dose steroid pulses. Doxorubicin is a new chemo that she has not seen before. She will get 3 doses in the first half of this phase. It’s called the red chemo and is a drug that will cause all hair on her body to fall out, including eyelashes. Her long beautiful lashes.
She will continue to take a pneumonia preventative drug on the weekends and daily Pepcid to help with acid reflux as a result from the high dose steroids. On day 4 of the first half of this phase , Amora will get a drug called cal asparaginase. She has only had this drug once. We pray for no reactions to this drug as many have had at the second administering.
It is expected that her counts will zero out after the 3rd dose of the red chemo. If she makes counts after the last dose, she will start the second half of delayed intensification. Another mountain to climb.
Amora had her first echograph today- to set a baseline of her heart functions prior to this phase of treatment. Easiest part so far. ha She even fell asleep while in the imaging room. Sleepy girl.
We are preparing for this phase- knowing Amora will have the highest risk of infection when her counts zero out - We will be pulling Elijah from school, and enjoying our holidays in isolation. It is unknown when her counts are expected to recover, but it could be into February.
Thank you for following our story and praying for us. We appreciate every word, every nightly Amen, and every breath God graces us with.
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