Currently we have one patient story. We cannot certify any story, but it is true to our knowledge and inspires us to move forward.
Disclaimer: for information only, not a medical or any form of advise. We are not associated with any drug company and do not intend to promote any drugs for any purpose.
My daughter that fights the brain cancer monster with capsules
Dear patients or parents or brain cancer,
If you have been able to read this, know that there may be hope.
I want to share my unique story with my lovely 3 year old daughter with her unique high-grade-glioma and I’ll try my best not to waste your time. There is also a TL;DR section in the middle for a summary of some important information, after the story timeline.
The Story Timeline:
2024.10 First and only focal seizure after losing functionality on her left leg. It was pretty bad and she underwent 2 drugs to stop the seizure, and was hospitalized for 2 days. She had a lesion without clear fluid constraints. We had mass confusion about the situation, potentially infection, birth/growth defect, and maybe not plausibly, tumor.
2024.10-11 She hasn’t had a seizure since, and we got Keppra and Midazolam just in case. We didn’t use it and she was ok. We started researching about surgeons.
2024.12 6 weeks later, the second MRI confirms the increase of the lesion, too fast grown, no time for biopsy, craniatomy immediately planned. I started researching symptoms, and started looking for cures in research papers, including some immune therapies, also some potential herbal medicines.
2024.12.23 Surgery, GTR (gross total resection) achieved… I thanked our brain surgeon for his expertise, but was also a little upset that even GTR cannot guarantee a clear boundary. 6-8 Weeks clock starts to tick for Radiation to increase survival. “Honeymoon” starts.
I started to focus on Innovative New Drug, papers, treatments; got into various research papers that showed dismal brain tumor prognosis. I dug deeper into ACT001, which had many promising research papers.
2024.12.25 Going home on Christmas.
2025.1.2 +1W: no result.
2025.1.7 +2W HGG… DNA/RNA pending. We scheduled a local Rad-Onc. Signed papers for Investigative New Drugs. I learned about TMB. We applied to St Jude for a 2nd opinion.
At home: we started doing heavily research on Investigative New Drug. More research about ACT001, lowers side effects of TMZ, synergizes with radiation, increases efficacy of TMZ, very low side effects, tried to communicate with the company; Also researched proton treatment – lower 2nd tumor rate which is critical information.
2025.1.13 Local x-ray based Rad-Onc visit.
2025.1.13 Took a long time to wait for the pathology and treatment plans. However we got everything-negative (not just H3, but IDH, all tier-1/2 negative). Fused amplification of PLAGL1. We immediately started looking for proton centers. We still try our best to mediate some communicating with St Jude, which seems to be a little slow.
2025.1.17 Through friends we found some information about the IND process… Keyword: Make sure the communications are open.
2025.1.1x St Jude is still waiting on the tumor slides. We started communication with all prominent proton centers, including MD Andersons, Mayo AZ, and a few other hospitals. I have to manually make sure medical records are through to the different places and expedite them by proactively sending over images and all reports.
2025.1.23 Mayo schedule: 2/4 planning, 2/17 treatment… too late for the girl. Going to MD Andersons to try luck.
2025 1.24 Mayo: simulation 1/30, treatment 2/5! Solid and THANKS SO MUCH!!!
2025.1.26 Going to Houton! Being a member of ASTC, we went to the science museum and space museum.
2025.1.27 MD Anderson’s appointment…scheduling status pending.
2025.1.28 Arrived in Phoenix. St Jude: Planning 31st and treatment 2/9. They offered “All inclusive”.
2025 2.5 Phoenix! Roaming in all museums across Phoenix.
2025.2 Bad news: ACT001 is hard to obtain and takes months for Phoenix Children’s.
2025 3.21 proton finished.
2025 4 – ACT001 application didn’t go through when Jina was ready for her cycle 1. I vowed to the doctor to keep fighting for my girl. I can’t thank my doctor enough when he has to spend personal effort the second time for my girl.
2025 5 – ACT001 approved together with ACNS0423 2nd cycle for my girl. It requires an MRI schedule every 2 months and I heard the whole process will last for 2 years at the moment.
2025 6 – 2025.10 Progression Free so far. Halloween is approaching again. She went to many trips of trick-or-treating in a lovely butterfly costume from Costco.
As parents, we went through massive transformation to reach the state we are today. We struggled but we decided not to let things go. We were finally at ease by living life the most meaningful way possible. We love life, and accompanying that is every single of life earned. after all the efforts If we can live one more day or one hundred years, there is no difference after all the and we want to induce that confidence into our daughter’s life as she grows up.
When my girl refuses the chemo-infused chocolate syrup or apple sauce, I have to push her away with a few broken hearts in between if the mom is holding the spoon.
When she throws up we have to strongly ask her to drink the liquid a couple of times.
ACT001 is so bitter that it is practically impossible to mask when decapsuled. For the 4-capsules twice daily dose, we were struggling at first, finding out that the maximum tolerance and optimal mixture of apple sauce and monk fruit powder for the poor girl (1x per 30 minutes with ~15ml apple sauce). If it is too much capsule she will throw up. If it is too much apple sauce she cannot finish.
But fortunately, we found enough relief soon; we bought some size 5 capsules with Mama Chia pouches that can help her swallow. She is surely remarkable at 3 years to accomplish that, and I want to share that she can manage the TMZ 5mg capsule (size 3) and ACT001 capsules immediately.
Well, then she throws up anything that tastes like TMZ… I had to still open the TMZ capsule as the 20mg yellow pill is too big. Good news is that his daddy had developed a critical skill for her survival: repackaging 3x 20mg capsules into 11 size 0 capsules. It takes me about 1 hour to do all 5 days’ dosage, but it is virtually pain-free for my girl.
My girl is progression-free at the moment. She enjoys her early-pre-k Mon-Thu in the afternoon with gorgeous peers. I pray to Buddha twice every day for her wellness. We still don’t know what caused his cancer in the first place, and the diagnosis is the generic Pediatric Type High Grade Glioma. Currently it may just be her, but we hope one day her case may be able to help other people.
TL;DR: Keywords: do not give up, Short-Term-Disability may cover for family members, FMLA may apply, act fast with tangible confirmations, always have the best team around you, use 2rd opinions, and research for new drugs including ACT001, check for IND or FDA Expanded access..
Disclaimer: this is not medical advice. The only person who can give medical advice is a doctor, who may not be able to give advice beyond current established treatments.There are many drugs in somewhat approved state that may be subject to Single-Patient-Trials. Caregivers, or patients, please research with god speed with your own eyes, the many possibilities, and use that critical information to fight for your survival. Do not waste time, and go, go with a new day, go with the love of life.
Special thanks for the following wonderful cancer fighters:
Children’s Hospital Colorado for everything
Mayo Clinic Phoenix Proton Center for everything including our stay in Phoenix
Phoenix Children Hospital for everything and wonderful food
Accendatech for providing ACT001
Everyone that is committed to fight the strange and foreign growth of tissues.
Also thanks to MD Andersons and St Jude Research Hospital for providing us with some potential alternative all-inclusive options.
P.S.:
My girl’s emotional pitches:
Girl: What do the germs say? (holding the distinctive blue-and-white ACT001 capsules)
Girl: What do the germs say? (in front of TMZ applesauce)
Girl: Mimimal (her stuffed cat), this is just a mosquito bite (holding a syringe).
Girl: Let’s go to Ikea (for icecream).
Dad: I love you. Girl: No, no daddy, I love mamma. Mom: That’s my girl.
Girl: chi-nai (for breastfeeding)…
Girl: do not cry, oo-oo-ahhh. (showing breathing technique to counter emotion to a crying classmate in early-pre-k)Girl: I’m sad dad is going to die like a moth (in the basement). Dad: No, we live much longer than a moth. I promise I won’t die like a moth.
Girl: Dad, don’t just say love you love you, say something else.