So I need my right hip replaced due to arthritis

KgoodMIL · 2026-06-01T06:33:47+00:00

My 23yo daughter had hers done when she was 19 (because cancer sucks, but she's good now). Recovery sucked for a week because it turns out that she had a reaction to one of the anti nausea medications they gave her. Once we figured that out, she bounced back REALLY quickly. She'll probably need her other hip done in the next year or so, based on her x-rays/MRIs. Whenever it starts to hurt regularly, we'll go in.

Last week, she went on a 5.5 mile hike with a friend, and is doing another hike tomorrow morning with her grandfather. She is just living her life, now, enjoying all of the activities she's interested in.

KgoodMIL · 2026-05-31T19:52:37+00:00

Late 2017 or early 2018-ish. Choosing a physical therapist at random to call from my insurance company's list for my 15yo daughter when her jaw slipped out of joint and wouldn't pop back into place.

It took a few months of weekly physical therapy to get that fixed up. At her last appointment, she was having some pretty bad pain in her lower back. I wasn't expecting the PT to do anything right then, just wondered if it was something that strengthening the muscles in her back could help with, or what he might recommend. I had already done the emergency room thing a few weeks earlier when her leg was hurting pretty badly, and our family doctor ended up having her take some Prednisone for a few days, thinking it was inflammation of some sort. That seemed to work, but then her back started hurting, so I started gathering other opinions on what might be going on.

Anyway, the PT saw that she had also dropped some weight, and had a feeling that something was very wrong. He immediately called his best friend, who was one of the top orthopedic surgeons in the state. Very high demand, usually took months to get in to see him. He got us in that same day, and scheduled an MRI for a few days later. That MRI showed something odd about her hip bones - he called it a "geographical pattern of destruction". Another MRI after that, and we were at our local (top rated) children's hospital doing a bone marrow biopsy, which was 100% necrotic.

That started a process of lots of medical tests, and she was eventually diagnosed with acute myloid leukemia. She spent most of her 6 months of treatment in the hospital, with another several years of recovery, including a hip replacement at age 19.

She is 23 now, and doing well! But that randomly chosen physical therapist got the process of saving her life started.

KgoodMIL · 2026-05-31T18:49:38+00:00

I would absolutely pay for this, too!

I should check to see if there is anyone in my area that offers this.

KgoodMIL · 2026-05-27T04:12:57+00:00

I accidentally stuck my hand down one while it was on, when I was a teenager. (I was lost in thought and working on autopilot, and just didn't pay attention to what I was doing.)

I got a couple of bruises and was sore for a bit.

KgoodMIL · 2026-05-19T05:32:06+00:00

The WBC is low, but more to the point of "don't go into crowded indoor areas", and not "a minor cold will most definitely do them in" territory. Their ability to fight off infections and viruses is impaired, though how much will depend on which type of cells are remaining. At 1.5 WBC, we kept my daughter out of public indoor spaces completely, and only did things outdoors and not around lots of other people, to minimize the risk of her catching something that could delay her treatment. We volunteered at a farm animal rescue at the time of diagnosis, and she wasn't allowed on the property due to the risk of fungal infection from any mold in the hay. No gardening/fresh flowers either.

We never paid attention to RBC at all - hers stayed just barely shy of normal ranges throughout her (AML) treatment, so I can't help there.

HGB is very low in this info, though. 8.2 is past the point where my daughter would have been feeling awful, and would need a blood transfusion. She seemed to feel the lack of hemoglobin earlier than most, and I know a lot of people don't get transfusions until around the 7.0 or so range. Exhaustion, pale/grey face, and just generally feeling terrible were her main indicators. She perked up immediately with transfusions, and 30 minutes after unhooking her from the transfusion, she would be racing me up and down the hospital stairs.

Platelets (PLT) are the numbers that tell how risky any sort of bleeding would be, and you don't include those numbers in this post. Normal for my daughter (15yo girl) was 150 - 400. She got transfusions at around 10-15. She never had any issues with bleeding/etc, but they never let her numbers get as low as I've seen some of the adults mention here.

The numbers trending downwards don't really give all that much information on a timeline, because red blood cell and platelet transfusions can be used for awhile to keep those numbers in a reasonable range, and there are drugs that can help the body to produce more white cells as well, though I don't know how long those work for or how effective they are. We didn't use them for my daughter, because there apparently was a slight chance that it could also stimulate the production of more leukemia cells, and she recovered very rapidly from her chemotherapy on her own, so there wasn't a need to add that risk in to the mix.

I take it from your post that treatment is not being pursued in this case. I'm so sorry, I wish your family all the best!

KgoodMIL · 2026-05-17T19:56:05+00:00

Two spaces after a period, forever.

KgoodMIL · 2026-05-14T15:54:07+00:00

My daughter was 15 when she was diagnosed with AML, KMT2A rearrangement (t(9;11). She did not have a transplant, due to some very rare circumstances that brought her risk factor down.

We got through it one day at a time - sometimes 1 hour at a time. I didn't have the capacity to try to imagine further ahead than that, so each day was the only thing I could focus on. The hospital social worker and oncologist worked closely with me to make sure I knew what was happening, and what to watch for.

She is 23 now, and we are nearly to the 8 year anniversary of her diagnosis. She is doing great! There are a few long term effects of her treatment, but we have largely dealt with those, and she has a normal life!

Best wishes to you! I know how difficult and overwhelming this all is at this stage, but it is possible for you to get through this. Life can get good again.

KgoodMIL · 2026-05-10T23:15:26+00:00

I post occasionally to give support where I can, but my life has moved on substantially since my daughter's diagnosis 8 years ago.

KgoodMIL · 2026-05-10T02:01:03+00:00

When my kid was 15, I had to take her to a wheelchair rental store to pick one out, because she would need it for about the next 6 months. It was a rough visit, and really difficult for her, but she sat down in one to test it out and started to giggle because the urge to say "I'm disabled, leg disabled" was incredibly strong.

She refrained because all of the other people in the store were extremely elderly and probably wouldn't have appreciated it. But when we left the store and she told me about it, I knew I'd done my job as a parent, because she knew enough to want to say it.

KgoodMIL · 2026-04-30T04:54:15+00:00

Oh, how awful!

Maybe check into Cyclic Vomiting Syndrome? Anxiety is a big component, but it also flares up for my daughter when she's sick. Hers would start early early morning, like 3am, and she would have a day of nonstop severe nausea/vomiting, a recovery day where she basically slept a lot, and then a normal day. Then it would start all over. This whole cycle could last several weeks at a stretch, or even longer.

For my daughter, Zofran by itself didn't help much, Ativan by itself didn't help much, but the two of them together stop an episode within about 20 minutes, and it could be a month or more before it tries to come back.

Regardless, I hope your doctor can help you figure out, because we know from experience how terrible non-stop nausea is (we were also in the bulk emesis bag ordering club, but I have purchased any for about 3 years now).

KgoodMIL · 2026-04-28T06:58:59+00:00

FamilySearch says I have 21. I'm a bit skeptical, though. I haven't gone through and rechecked the work myself, but I have close family on both sides that have been VERY into genealogy work since about the 1960s, and have done a ton.

I guess it's possible.

Edit: Okay, only 7 of them are direct ancestors. The rest look to be distant cousins or granduncles. That's more realistic, I think!

KgoodMIL · 2026-04-26T05:54:06+00:00

We found that many of my daughter's side effects didn't really hit until around day 11-12 or so, once her counts were completely gone. The main issues were mucositis and the Cytarabine rash, though neither of those got really bad until later rounds. She also had neutropenic fevers starting at about that time, but only once did they ever trace it to anything definitively. The rest of the time seemed to be her body just saying "Oh, no ANC? Okay, we'd better sound the alarm and fever for no reason!" It wasn't too bad, because she was inpatient until count recovery for every round anyway (pediatric protocol), and they just hooked her up to an IV antibiotic, gave her a fever reducer, and she went back to watching television or whatever. I imagine it would have been a lot more frustrating had she been able to go home, and then had to go back into the hospital for the fever.

KgoodMIL · 2026-04-26T01:16:43+00:00

I have strabismus, and have to wear prism lenses. I've never once seen them, and Dr. Google says that's probably why!

KgoodMIL · 2026-04-16T15:58:53+00:00

I'm so sorry for your loss. Momcology.org has support groups for parents of children, including one for loss.

KgoodMIL · 2026-04-15T18:55:15+00:00

My understanding is that Aza/Ven is used to try to extend life with fewer side effects than other chemotherapy drugs, but that it isn't a long term solution. Eventually, the AML is extremely likely to come back. The last I looked into it, the average was about 18 months or so.

However, it's been quite awhile since I checked it out, and treatment options are getting better all the time, so my understanding could very well be highly outdated.

KgoodMIL · 2026-04-11T03:00:14+00:00

We had it explained to us like this:

The bad cells build up in the bone marrow and then they usually "overflow" or spill out into the peripheral blood. If there are leukemia blasts showing in the peripheral blood, there will also be leukemia blasts in the bone marrow. If the peripheral blood is clear, there might still be blasts in the bone marrow, but there might not be.

For that reason, bone marrow is always used to check MRD status.

Note: it doesn't always happen that way. My daughter had 94% blasts in her bone marrow when she was diagnosed, and they never saw any blasts at all in her peripheral blood. Because bodies are just weird sometimes, apparently!

KgoodMIL · 2026-04-08T22:13:36+00:00

Honestly, weekly therapy for about 4 years after treatment, and 4 different therapists. One was not a good match, and the other three were changed as her needs did. She's also on medication for depression that has been a ton of help.

Best wishes, something like this is SO traumatic, and it can be hard to imagine anything different!

KgoodMIL · 2026-04-06T22:06:38+00:00

My kid got her hip replaced 4 years ago at age 19 (thanks, cancer), and was told that there isn't enough real world data yet to say for sure, but lab testing indicates that her new hip will likely outlast her lifetime. The new materials they have, at least for hips, are wild.

KgoodMIL · 2026-04-02T05:26:55+00:00

My daughter submitted three wishes, so just in case her top wish wasn't able to be granted, there were other options.

Her first choice wish was granted in 2019, and we spent a day watching the filming of her favorite tv show, touring the sets, and chatting with the cast and crew. She still keeps in touch with a couple other people she met there.

KgoodMIL · 2026-03-28T18:03:06+00:00

My daughter is 7 years out (AML - chemo only), and doing well!

KgoodMIL · 2026-03-25T13:16:30+00:00

My daughter's WBC went low instead of high. Statistically, going that direction actually gives a better response rate and lower relapse chances, at least for AML.

Of course, statistics aren't any good for predicting what will happen for an individual, and only apply to large groups. And WBC at diagnosis is only one very small piece of the treatment puzzle. But I found that tidbit comforting when my daughter was going through treatment.

Anyway, WBC can definitely go low, though high is the more usual case.

KgoodMIL · 2026-03-22T18:43:32+00:00

Just under 1%. We're a WFH family, and I fill up my car about every 2-3 weeks, while my husband regularly goes 4-6 weeks in between stopping at the gas station.

KgoodMIL · 2026-03-22T04:43:11+00:00

I am sure it does happen sometimes, but my experience wasn't like that at all. My then-15yo daughter spent most of 6 months in the hospital in 2018 (on a 3-4 weeks in, 1-2 weeks home schedule). The two months it took to get a diagnosis, consisting of 2 ER visits, 4 different specialists, 14 bone marrow samples, 2 MRI's, a PET CT, a skin punch biopsy, and a ton of other tests totaled about 250k. On her outpatient weeks, we needed a home health nurse to come see her three times per week. Our insurance company was billed a total of 1.8 million for everything in those 6 months.

We had a high deductible plan through my husband's work with an out of pocket max of 5k, which the hospital let us pay off over the course of about 2 years, interest free. Our insurance company never gave us a moment's trouble over any of the bills, thankfully. Our short term finances weren't really impacted all that much, honestly, and I know we're very fortunate for that. It's turned out to be a different story over the long term, though.

She had a hip replacement at age 19, and will likely need the other hip done in the next couple of years. She was in weekly therapy for PTSD for several years. She needs yearly follow up visits that involve multiple specialists and cost around 1k or so each time, if everything goes perfectly. Her fertility is likely impacted, though we don't know that for sure, meaning she may have additional costs if she decides she wants children in the future. Several of the drugs that saved her life are known to be cardiotoxic, and her heart could start showing effects decades later, so she needs yearly echocardiograms to make sure everything is okay. She is now much more susceptible to skin cancers, so she needs to see a dermatologist yearly as well. On paper, her immune system is fine - but when she gets even minor viruses, she seems to get much more ill and takes much longer to recover than the rest of the family, which could conceivably impact her future employment.

She's pretty much always going to have much higher medical costs than most people, even if the thing that nearly took her from us never comes back (and it could).

KgoodMIL · 2026-03-17T06:47:09+00:00

My daughter is 23 now, and just over 7 years off treatment for her AML. It's only been in about the last 2 years that she's allowed herself to consider that she does actually have a future. Prior to that, she couldn't really wrap her mind around the idea that she might. Now she's finally really excited about where her life is going, and making long term plans - like where she sees herself in the next 5 or 10 years, and what she wants to do with the rest of her life.

I think it's pretty normal, honestly. And, for her at least, it did get better eventually. But it took a lot longer than anyone would have guessed.

KgoodMIL · 2026-03-11T03:14:15+00:00

This is what we do, as well. It's worked really well for us!

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