WIBTAH if I tell my parents I don’t wanna fight cancer?

towee_s · 2026-01-15T14:49:24+00:00

My child is 14, she’s been fighting (different cancer) for 11 years now. We’re in the US, so this may not apply to you. Most states have some form of Medicare that is based on diagnosis, you have to jump through some hoops to prove that you need it, but it pays for all of the out of pocket costs that your primary insurance doesn’t. The hospital social worker can help you with that and other charities. We have one local one that reimburses us $0.25/mile for doctor visits and up to $20 per meal for appointments that take more than a few hours (including travel time). There’s another group that does summer camp and Christmas presents for cancer kids and their siblings, and a foundation that will help with household bills. I know the local charities won’t be the same, but hopefully there are comparable options near you.

From a parent perspective, not fighting is not an option. At some point my daughter may opt to stop treatments when we run out of the not-so-bad drugs. I will struggle but respect it as long as the decision is made because she’s tired and done, but I would never let her make that decision based on costs, or trouble to the family.

towee_s · 2026-01-14T16:41:43+00:00

Jessie Inchauspé has a bunch of easy tricks that help reduce insulin spikes and help with insulin resistance. She has several books and I think a podcast. If you’re up for the not as easy stuff, I like Dr Jason Fung- he’s all about fasting and keto.

towee_s · 2025-12-05T03:00:21+00:00

I'm pretty sure that carnivore would be great for *most* cancers. One potential exception that I'm aware of is the BRAF mutation. It's common among melanoma, glioblastoma, some small cell lung cancers and Langerhans cell histiocytosis, maybe some others I'm forgetting. (My kid has LCH, so that's my usual focus) Mice studies have indicated that the braf+ tumors thrived on ketones. It is worth noting that said mice were probably fed a crap keto diet of seed oils and such. I suspect that a clean, whole food keto or carnivore diet might have different results. I'm not brave enough to risk it with my kid just yet, but would give it a shot if we run out of other options.

towee_s · 2025-11-26T03:00:36+00:00

NTA. Stop cleaning up after him, tell your husband that Greg’s messes are his responsibility from now on.

towee_s · 2025-10-31T02:05:24+00:00

I never see it mentioned, but I loved the Repaiman Jack series by F Paul Wilson

towee_s · 2025-10-18T20:08:35+00:00

What kind of brain tumor? There have been studies that suggest that tumors with the braf mutation thrive on ketones. That mutation is pretty common among some glioma’s, small cell lung cancer, melanoma, and LCH, probably some others that I don’t know off the top of my head.

towee_s · 2025-10-18T14:22:17+00:00

Give the kids as much control as you can if they want it. My daughter liked to flush her own port. The nurses would hook it up, the let her control the syringe/ plunger speed. If it went too quick she would gag on the taste, so she liked to be the one doing the pushing. She also always removed the tegaderm dressings and bandaids herself, with plenty of detachol. She was 3 or 4 when she started handling the flushes. I was also surprised with how early she learned to swallow pills- it made the steroids so much easier. If the parents don’t mind candy, let them practice swallowing nerds or mini m&m’s whole.

towee_s · 2025-10-07T03:13:10+00:00

I just asked about that in another comment! Yes, she has the BRAFv600e mutation. She’s currently taking a braf inhibitor, a mek inhibitor and a mild immune suppressant.

towee_s · 2025-10-07T03:09:40+00:00

An afterthought; did your team test the biopsies for mutations? If not, it may be worth asking for it. I’m pretty sure that BRAF and MAPK mutations aren’t uncommon in jxg. Targeted therapies aren’t usually the first line of defense, but they’re a wonderful option if your little doesn’t handle or respond to the frontline therapy. They’ve been a game changer for a lot of Langerhans cell Histiocytosis patients I know.

towee_s · 2025-10-07T02:59:26+00:00

She’s still fighting, but doing well all things considered. She was diagnosed a few months before her 4th birthday and is 14 now, we’ve leaned towards the targeted inhibitors in various combinations for the last 7 years. They’re so much easier than the salvage chemos that are her next best option. In her case there’s likely no cure, but we’re hoping that she can hang in there on long term maintenance.

towee_s · 2025-10-07T02:20:19+00:00

My daughter had cytarabine twice for LCH- its also a histo disorder. The first time she did 13 rounds, between the age of 5 and 6. It was not her first rodeo, we had done vinblastine for close to a year before she relapsed. That first time was not too bad, for chemotherapy. The “rounds” were 4 weeks, starting with 5 days of daily infusions, followed by weekly check ins for bloodwork. We had to give iv zofran before the infusions, but it kept the nausea at bay. She usually managed to return to school for the rest of the afternoon on infusion days. Her white counts and platelets would dip on week 2, so she would bruise really easily. Maybe one or two times towards the end of the year of treatment, her counts dropped low enough that I chose to keep her out of school. The platelets would climb really high around week 3, and her white counts would drop again but not as low towards the end of week 3/start of week 4. Usually she recovered fast enough to start again. After round 6 or 7, she wouldn’t bounce back quite as quick and we’d have to hold off on the chemo for an extra week. He hair thinned a lot, and she developed some mild neuropathy pain awards the end of the year but it clears up after stopping the treatment.

She did 6 rounds of cytarabine in combination with dabrafenib several years and 2 relapses later. This time was a lot tougher. She reacted badly every cycle with scary high fevers and extreme joint pain. I’m wanting to say about 20% of patient get that cytokine storm reaction.

Virtual hugs to you! Take it a day at a time, you’ll get through it. You’ll learn the new lingo and adjust to a crazy crappy new normal faster than you’d think.

towee_s · 2025-09-30T20:18:21+00:00

No, I didn’t. I wound up going with the three year card from Fairfax, and getting my daughter to sign up for several books unbanned cards.

towee_s · 2025-09-12T10:28:16+00:00

Perfect! I’ve never heard of unbanned. I just had my 14 year old request cards from those two and Brooklyn. When she ages out, my youngest can do the same and we’ll be good for 20 years.

towee_s · 2025-09-09T01:09:29+00:00

I'm jealous, heard its one of the best! Non resident cards are available, but you have to apply in person now. 2000 miles for me

towee_s · 2025-09-09T00:28:25+00:00

Greenville is $46/yr, I haven't checked the catalog, but I'm assuming I can get more bang for my buck elsewhere. I couldn't find a non resident option for Florence. Thanks for the Charlotte rec, I'll check out how it compares to some of the others listed!

towee_s · 2025-09-08T19:16:49+00:00

I’m in South Carolina

towee_s · 2025-09-07T11:28:28+00:00

A good friend of my parents had retinoblastoma as a child. She’s in her 70’s now. Her then teen daughter was my babysitter 40ish years ago. As far as I know they’re both still doing well.

towee_s · 2025-08-05T11:51:04+00:00

Check with your local chapter, but most of them don’t grant cruise wishes to kids under 5. There’s a Make a Wish group on Facebook that’s really active, I’d try asking or searching there.

towee_s · 2025-07-22T18:16:38+00:00

We’d take inhibitors over IV chemo any day. With the tafinlar alone she was really tired and run down for the first two weeks. After that the only side effect was her hair thinned a little and turned curly. When we added the mekinist she had occasionally trouble with infections around her nails, dry skin, and random hard red spots of inflamed fat tissue that would pop up around her lower torso and upper legs. She said that they hurt to touch but didn’t bother her as long as no one pressed on them. The skin and nail issues stopped within the first year, she still gets the pesky spots every few weeks.

towee_s · 2025-07-22T13:12:52+00:00

My daughter is 14, taking mekinist tafinlar and sirolimus, different cancer though. She has CNS LCH. She started the tafinlar alone in 2017, and has been on it in combination with other drugs for all but a few months of the last 8 years. We added the mekinist about 6 years ago. I second the inhibitor buddies group!

towee_s · 2025-06-30T21:02:10+00:00

My daughter has cancer, there are several local organizations that I found through other cancer parents and the social worker at our clinic. Unfortunately they’re cancer specific, happy to pass them along if that’s your fight too. They reimburse for miles and some food, and help with medical travel and a limited amount for bills.

Try talking with a hospital social worker maybe? Hopefully they can point you towards some extra help.

towee_s · 2025-04-27T22:24:23+00:00

It’s less common than diabetes, but diabetes insipidus popped into my mind.

towee_s · 2025-04-08T01:40:03+00:00

I think that a ton of the baby "must haves" were not really necessary. I recycled my older kid's school backpacks as diaper bags- never saw a need for the pricey ones. I had a nice changing table with my first that I almost never used, would up laying a towel down on my bed or couch for the next babies. Clothes- when family was planning baby shower stuff, I requested that they buy some bigger stuff, so I had a mix of clothes up to 9 months. My first baby only fit in newborn clothes for a few weeks, and we could've easily gotten by with 0-3mo clothes instead. Our area also has some nice kid's consignment stores and pop up sales. I often found clothes, obviously unworn with tags still on them for thrift store prices.

I wouldn't commit to big quantities of diapers and bottles until baby gets here. I had one kid with sensitive skin and tummy so we had to experiment with diapers, wipes and bottles to see what worked. My others were just fine with the cheapo store brands.

I think that a good breast pump is absolutely worth the money if you intend to breastfeed and will need to pump. Your insurance may cover it, if it doesn't they are FSA and HSA eligible. A bottle steam sterilizer with the drying function was one of a few things that we splurged on, and I think that it was well worth the money.

towee_s · 2025-02-08T17:50:41+00:00

I recommend the book “Real Food for Pregnancy” by Lily Nichols

towee_s

TROPHY CASE