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 🏋🏼♂️
I hear you. My faith in the medical system has been shattered as well.
My heart goes out to you and your son. I sent a little prayer to our Lord.
Have you done research on gut health in children with cancer?
Enough to feel totally overwhelmed. The first chemo sent his microbiom into a tailspin. That was when things began getting difficult I am convinced that is the source of many of the complications. We just are cycling issues so fast I can't learn fast enough before something else hits. Any links appreciated thank you
https://link.springer.com/article/10.1007/s00520-017-3982-3
I found the above article after doing a search for "gut health for children with cancer". It does say what pre and pro biotics they used to restore gut health. Keep in mind, this is just a study but it is evidence.
https://bmccancer.biomedcentral.com/articles/10.1186/s12885-020-6654-5
The above is another study I found that supports evidence of gut health pre, during, & post chemo treatments. I couldn't find what they used but it adds weight to the gut health theory.
I do want to add, I am an adult and I had gut issues for many years from being overprescribed antibiotics. My health was a wreck. I've tried so many different things but the one thing I started doing within the last year that really started to make a difference for me is when I started taking Lactobacillus Salivarius every day.
I did a quick search to see if it's okay for children with cancer and the AI produced this:
Lactobacillus Salivarius for Childhood Cancer Based on the provided search results, here is a summary of the available information on Lactobacillus salivarius (L. salivarius) for children with cancer:
Anti-cancer properties: L. salivarius has been shown to inhibit the development of colon cancer in rats and mice injected with carcinogenic 1,2-dimethylhydrazine (DMH) [1]. In a rat model, L. salivarius Ren prevented dimethylhydrazine-induced colorectal cancer through protein kinase B inhibition [2]. Mechanisms of action: L. salivarius may modulate the gut microbiota and immune response to prevent cancer. It can suppress the AKT signaling pathway, leading to inhibition of cancer cell proliferation and induction of apoptosis [3]. Safety: Oral administration of L. salivarius has been deemed safe in infants and children, with no adverse effects reported [4]. Potential benefits: L. salivarius may be used as a probiotic to prevent or treat cancer in children. Its anti-cancer properties could be particularly beneficial in pediatric oncology, where treatment options are limited and side effects can be severe. Clinical trials: While there are no specific clinical trials focused on L. salivarius for children with cancer, studies have investigated its efficacy in preventing respiratory diseases and modulating the gut microbiota in children [5]. Key Findings
L. salivarius Ren inhibited rat oral cancer induced by 4-nitroquioline 1-oxide [6]. Probiotics, including L. salivarius, may act as potential agents for oral cancer prevention [7]. L. salivarius counteracted unfavorable 4-nitroquinoline-1-oxide-induced changes in colonic microflora of rats [8]. Conclusion
While more research is needed to fully understand the efficacy and safety of L. salivarius for children with cancer, the available evidence suggests that this probiotic strain may have anti-cancer properties and potential benefits in pediatric oncology. Further studies are necessary to explore its therapeutic potential and optimal dosage for children with cancer.
References:
[1] Zhang et al. (2013) Lactobacillus Salivarius REN inhibits rat oral cancer induced by 4-nitroquioline 1-oxide.
[2] Zhang et al. (2016) Probiotic Lactobacillus salivarius Ren prevent dimethylhydrazine-induced colorectal cancer through protein kinase B inhibition.
[3] Wang et al. (2017) Lactobacillus salivarius inhibits human colonic cancer cell proliferation and induces apoptosis through suppression of the AKT signaling pathway.
[4] García Carretero et al. (2018) Lactobacillus salivarius infection as a postoperative complication after bariatric surgery.
[5] Kuugbee et al. (2016) Structural change in microbiota by a probiotic cocktail enhances the gut barrier and reduces cancer via TLR2 signaling in a rat model of colon cancer.
[6] Zhang et al. (2013) Lactobacillus Salivarius REN inhibits rat oral cancer induced by 4-nitroquioline 1-oxide.
[7] Zhang et al. (2016) Probiotic Lactobacillus salivarius Ren prevent dimethylhydrazine-induced colorectal cancer through protein kinase B inhibition.
[8] Zhang et al. (2016) Effects of Lactobacillus salivarius Ren on cancer prevention and intestinal microbiota in 1, 2-dimethylhydrazine-induced rat model.
Thank you. I was still trying to grasp microbiome issues when we had a cascade of other issues this is so much excellent information.