I deeply apologize if this is not allowed but I am throwing all caution to the wind. I had an experience that lead me to Christ. It was the greatest decision of my life. It was the same experience that set me searching based on certain behaviors for understanding and that led me to Q and to this board. I have kept my head down for years. Not so much from fear but more from situations that have kept me too busy to think of anything else. I am so grateful for this board and the fellowship here. I have also learned a great deal. I feel terrible asking for more but I am desperate. I need prayer. I also need minds sharper than mine. I am in a battle not for my life but my child’s. For years I have been fighting and I am so very tired. Pediatric cancer is a monster and we have no savings left no doctors with the knowledge left and now there is yet another new and painful mystery ailment. Now I need to go to yet another new hospital where I have to meet round after round of doctors. We have had such horrible experiences that just the idea of another hospital makes me nauseous. I feel like I am walking this tightrope. I have to give them enough information to help them figure out what to do or test to order but if I don’t address them just right we will be blown off. Twice I didn’t handle that right and twice we had to be life flighted when it wasn’t “me overacting “ it is so hard. My only comfort is knowing that at the end of the day it is in my Lords hands. Yet I am literally trembling as I organize all the paperwork and pack and check meds. Please please pray for us. The pain is tremendous and with a compromised liver my options are limited. We have been pressured so hard to transition to palliative care but that is not something he is ready for and in truth neither am I. He doesn’t want a painless death he wants to live!!!! We are very much in the crosshairs because of my refusal of the clot shot and I suspect there is something in the doctors notes because that was when everything changed. Please please pray we get breakthrough. His cancer is well managed but they still push palliative care. I am alone and I am exhausted and I can’t do it anymore but I will because I can’t NOT fight for him. I have seen God deliver so many times and my faith in him is strong but my faith in our medical system is completely broken.
I can’t do this alone
🧘Mental/Physical Health 🏋🏼♂️
Working through pediatric cancer now too. Found Zuza’s Way (out of WI). I know money might be tight, but Viscum (European mistletoe) injections help the liver detox.
We watched AST (normal range 13-40) and ALT (normal range 10-49) go from 319 & 796, respectively, to AST 29 & ALT 30 after 4 mistletoe injections.
Currently running $190/box (8 ampules per box) and you would need to schedule a “visit” (zoom or phone) in order to be prescribed mistletoe through Zuza’s Way… there may be others who Rx mistletoe, but finding someone who wants to work with peds is challenging.
I don’t have any more info (besides what I have seen here) regarding clots.
A word of caution if/when you start Fenben, expect CBC levels to drop the first 6weeks of use. They stabilize after that. If already on a blood degrading chemo (like methotrexate) be cautious. We just ran into a big issue bc I didn’t read carefully enough.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9413524/
I’m so sorry you’re dealing with this. May the Good Lord and Savior be with you and your beautiful boy. May He remove any remaining cancer and heal and repair every cell so this angel can grow healthy and strong all the days of his life!! 🧡🧡
Oh THANK YOU!!! Will be following up on mistletoe for sure
Also. I hate that we are in the same club. It is the worse club ever. Please let me know if you ever need anything.