I Am A two time cancer fighter diagnosed at the age of 17. I have endured countless blood and platelet transfusions, bone marrow biopsies, and am currently inpatient dealing with side effects from the bone marrow transplant I had Feb. 28th.
I was first diagnosed with Acute Myeloid Leukemia on November 16th, 2017. Because of many bad experiences with a couple of different doctors the time I came into the ER my counts were so bad that the doctors and nurses seemed shocked I was walking, talking, and breathing fine on my own.
After my diagnosis I was told I would be held in the children’s hospital for 4-5 rounds of vicious chemotherapy. I was allowed one week in between rounds (when my counts were strong enough to leave the hospital but not start the next dose of treatment) and I actually got to be home for Christmas that year. I ended up spending more around 7.5 months inpatient mainly due to septic shock I had after my last inpatient round of chemotherapy. I hadn’t left the hospital yet but we thought I maybe had a week, which was exciting because I had a DC trip with Camp Sunshine up soon, an awards banquet for American Red Cross Youth Hero Awards as well as Prom. Unfortunately I was unable to attend any of the events but the nurses threw me a prom and I got my award in the hospital as well.
After that I had a pretty great 7 months. I went to Camp Sunshine-a camp for teens and children cancer survivors-and I went to their senior retreat. It was an Outward Bound Event where we camped out in the Colorado mountains with tarps (the councilors had tents while the boys had one tarp to set up and share and the girls had another.) It was definitely a life changing experience with tons of adventures. It was definitely the hardest on me physically as I was closest off treatment and dealt with bad altitude sickness being the only one who lives below sea level and hasn’t spent much time above it.
I also went back to helping my old boss at her art studio, mostly in her sewing classes where she would work with a small group and I focused my attention on one autistic child who needed extra help, both behaviorally and artistically. I then got a new job and was training to be a 911 dispatcher/call taker for my county. The plan was to do that and online college once training was finished. I wanted to become a biomedical engineer which I’ve aspired to be since I was 9.
I still talked a bit to Caleb, who also had AML that went to the Outward Bound program together. Other than the occasional post or two on our snap group chat and instagram/Snapchat following I didn’t really keep up with anyone else. Caleb relapsed sometime in Late September or October. I was beginning to deal with some sketchy lab work and symptoms so it freaked me out as well as genuinely concerned me for him. But we’re both pretty upbeat when it comes to it; so it didn’t seem like too much. Unfortunately I followed close behind and Dec. 6th I relapsed as well. We were supposed to visit him in his hospital (the only hospital around that does BMT transplants) when I was visiting (it’s pretty far from me) but his lab work was good enough not to need a second round originally planned so we didn’t get to see each other.
I then finished my initial round of chemotherapy and went straight into full remission (with a few bumps in the road-I did have a lot of issues with my old hospital). Unfortunately during that time-Caleb passed from an infection which was really hard for me. My best friend I made at camp attended the funeral so it makes me happy to know for sure he got a nice send off with a lot of people who genuinely cared about him. I was then cleared for transplant, and had what so far seems to be a successful one. 🤞 I am dealing with some side effects and back for another inpatient stay, but I’ll likely go back to the Ronald McDonald Soon.
I know that’s a lot of information; but I promise that’s just the basic outline of my story. There is so much to tell and so much to learn about my story. Ask me anything. Nothing’s off limits. There’s a lot of things to talk about and AYA cancers in general are very rarely talked about. My goal is to spread my experience to hopefully help others as well. Most importantly to let people my age know that they do have a voice-and they may have not have ended up in some of the bad circumstances that I did because I was scared to use mine at first.
“Proof” Instagram where I sometimes add updates
Well, long before the cancer I had a falling disorder and double vision but since this was years prior and unlikely unrelated even though they stopped once treatments began and are a sign of it in your spinal fluid where I had a lot.
But the first definite sign I can tell you was the first week of senior year in August. Because my PCP basically told my parents I was crazy and making up all my other symptoms I went to the local urgent care. They told me it was strep even with a negative strep test (which is normal)
The strep never went away. In early September right before the hurricane I went back because I had fallen out of bed and my wrist hurt like heck and the bruise was huge and terrible and they took an X-RAY of it-but pretty much ignored my complaints that I still felt very sick. X-Ray was normal but I was given referral to orthopedic surgeon, knowing it might be awhile because of hurricane. Saw them in two weeks. Swelling nor bruise had gone down and bruise was actually worse. Schedules MRI for probably about three weeks later. Goes back to Urgent care (I saw the same doctor every time I went). He says virus. I saw that doctor 6-7 times. Usually said virus. Ignored two separate ingrown hairs, a worsening bruise, uncontrollable pain and weakness, and obvious paleness. MRI showed only blood that was blocked up in that area. No further testing was done. We went to an apple care fifty minutes away and blood tests were done immediately. This was November 14th. November 15th we were called and told to get to ER & official diagnosis cams on the 16th.
So, first week of August until then when it literally hurt to move an inch and I was pale as a sheet of copy paper.
Thank you so much for your kind words. And trust me that I’ve got that down. Everyone around me knows hand sanitizer is life lol.
Thanks for your reply. It's unfortunate that it took 4 months for your official diagnosis, especially with cancer!
I think some clinicians can be too dead set on finding common diagnoses instead of zebras) and would rather get the evidence to fit their preconceived conclusion. It is important for them to take a step back, look at the big picture, and reconsider their assessment, especially when you were getting worse despite following their treatment plan.
Thank goodness you persisted in trying to figure out what was actually going on. I definitely agree with you doing this IAmA, and as you said in your original post, letting people your age know that they do have a voice!
Thank you. I definitely feel even with the amount of times I did go, I didn’t stand up for myself enough. I should’ve just yelled at my parents to take me to the ER and not have pushed myself as much as I did to make myself seem less sick then I actually was. And I needed to acknowledge to everyone how much pain I was actually in. Maybe then I wouldn’t have been in such a bad position. Hopefully this teaches people to speak up more.
Urgent care told my husband his lymphoma was strep as well... and he had a bad pcp too. We felt the same way about needing to scream to be heard.
Thank you for sharing your story! I’m rooting for you!
At 14 I grabbed a physicians assistant by the shirt collar and told him "this is serious pain. Get a real doctor", real MD felt my hip (where, unbeknownst to anyone at the time, I had a Ewing's tumor) and goes "something is very wrong."
Fantastic job sticking up for yourself. I wish I had that chutzpah back then. I’m happy that you got the help you needed and hopefully you are doing so much better today.
I figured the thread was deep enough you wouldn't see any new comments popping up so I didn't say anything, but:
Keep kicking ass, I'm 8 (!!!) years out in December. I had Ewing's Sarcoma which isn't as nasty in the relapsing department as leukemias are, but I shared the transplant floor with the leukemia kids because of how low my counts got during some of my later chemo round (14 total, every two weeks).
When you finish treatment (hopefully for the last time) please make sure your doctor's stay on top of the long term effects of your treatment protocol. They're going to write some of it off as near term, but if it's bothering you past 6 months post chemo you should start advocating for yourself hard. It took me until last year to really start getting survivorship care, which takes many forms. Forgetfulness? Chemo brain. A lot of the trouble I had in school post chemo? Yeah I basically had late onset ADHD from treatment. Depression and anxiety, flashbacks? Probably PTSD rather than just the adolescent blues. I'm still trying to get pain management for the neuropathy I'm still getting.
Remember that you have rights as a patient, and a disabled person. You have a right to not be in pain (as much as possible), you have a right to go to school or work or public events with reasonable accommodations. You're not "taking advantage" of these rights (which is the language people will use, even subconsciously and not passive aggressively), you're asserting them.
I don't mean to scare you whatsoever (although like me I'm sure you don't get scared medically anymore), just hoping you can avoid some of my problems. Keep up the good fight and please feel free to PM me whenever if you have questions or need to talk.
I’m so glad you’re 8 years out and doing so great! I mean, if course I wish you didn’t have to deal with any of the long term effects or anything but survivorship is an amazing thing! And low counts suck but at least you met some cool folks because of it, that’s how I read it lol.
Thankfully the children’s hospital I’m at now works closely with Emory which will eventually become my primary hospital but they also have a survivorship clinic which helps track long term effects and matches you with the right kind of doctors and specialists you need to see, even when you’re done with all the initial treatments and follow ups from your BMT.
Because of the small, infantile immune system I have right now and the drugs I’m on now I’ve come to grips with the fact that going to events and places like the mall or otherwise even on quiet days is off limits to me at this point and for awhile. Anything to avoid getting sick is okay with me though, I’m looking for the best outcome possible. And I’ve thankfully learned to speak up now. Whether it be for pain management, chemo brain, the horrible nausea, etc.
Thank you for the offer and I definitely might take you up on it! And yeah Med stuff doesn’t really freak me out anymore except sometimes when I get worried the VOD might come back, since that is such a terrifying concept to me, but even dealing with that specific situation is getting a lot better.
I’d like to point out acute leukemia’s kill in weeks not months. She didn’t have leukemia the 4 months she was ill.
Edit : Since I’m getting downvoted so much: I have acute leukemia. I just happened to have a blood test done 4 weeks before my diagnosis. It was normal. When I was diagnosed I was told it was a late diagnosis and I wouldn’t have lived another week untreated.
I’m not sure why people are taking such offense to this. Doctors cannot read the future.
Have talked to several oncologists. They all believe I had it in August. It works differently in every single body. And lab tests can be normal in beginning stages. And almost all my doctors agreed that lab work should’ve been done. I have pictures of a month before diagnosis where I have no color left in my face. There was petechia everywhere. This is my experience as my doctors have backed me up. It may be our specific types as well. I’m Inversion 16 AML which works differently than inversion 17 AML drastically. (If that’s actually a thing I was trying to make a point.) I hope your treatment is going well. And I upvoted you. We all deserve to have questions and opinions. But my doctor definitely could’ve done more for me. We also found a horrible UTI, several life threatening infections, and pneumonia in my lungs. So maybe one of those was the major offender as well. But the doctor even at my request wouldn’t give me any more tests just look at me and send me on my way.
Am a doctor. Not saying I would have identified the condition on a first visit. But taken together, your symtoms and the infections etc should call for thorough bloodwork. Note that I dont know exactly what your doctor did/ordered, but still... This is the nightmare of us doctors working in primary care, missing something like this.
Unfortunately almost no tests were ordered beside basic mono test, strep, and flu. When I asked for a blood test once I was told it was unnecessary
Unfortunately doctors spend so much time talking patients out of whatever diagnosis they found on WebMd that they don't consider patients might really have rare or uncommon illnesses.
Patients need to be their own advocates now and demand they get thorough treatment if they think the doctor is wrong.
Yes, definitely. I never brought up anything I thought it could be because of this but I still definitely needed to speak up for myself more. It’s my main reason for creating this post. You have to advocate for you first. Then hopefully you won’t end up in as dire of a situation like I was in. Like I put it, I was lucky. I shouldn’t have been as cognitive as I was and anything could’ve happened because of that. I could’ve passed out some where, alone or otherwise and hit my head or started bleeding horribly internally (my platelets were around 5 or 6).
Is there a non blood test for mono now? I remember when I had it done (and tested positive) for epstein-barr (and suffering from lifelong side effects) it was quite a substantial amount of blood drawn. I guess medical advances have come a long way.
Enough about myself.. thank you for doing this and wish you the best!
If I remember correctly he only took cheek and nose swabs from me. Maybe he took a finger prick? I have no idea but no real blood tests.
I've been reading up on many people's diagnosis stories ever since I got diagnosed and it's struck me how some doctors can get it so wrong for so long. And with cancer, it seems especially bad since early detection can have major advantages. I feel so lucky I got diagnosed so quickly (although I waited a long time before seeing a doctor) but I've since met so many people, especially those with my type of cancer (nasopharyngeal) who get bounced around doctors for sometimes years...
I got “lucky” with my nasopharyngeal cancer. First doc (ENT) was an idiot. Asked my FIL, retired neurologist, who his ENT was. Saw that doc the next day with FIL right there watching the exam, this was Tuesday. Surgery was being set for Thursday, AM as I left the office for pre-robotic surgery scans. Made it through two rounds of surgery and heavy radiation, 60 grays. Tumor type was chemo resistant. Now clean 6 years out but, at age 66, the fatigue has kicked in. Still, with a near zero expectation, fatigue is the preferred outcome.
I hear a lot of ENTs who dismiss people who later had a nasopharyngeal diagnosis. I wonder if I might have been one of those people if I had not ignored all my symptoms for so long. But by the time I saw a doctor, I was having issues with my nerves so I think my doctor thought I might have had a stroke so they ordered a MRI which found the tumor.
I never had surgery so I count myself lucky in that regard because it seems like those who did have a lot of lingering pain... I did 33 rads along with six rounds of chemo and then three more rounds of adjuvant chemo. Man, the fatigue toward the end of those radiation sessions was so bad... Next month will be my one year anniversary of ending treatment so I'm still cautiously optimistic.
It's people like you who give me hope though. I'm younger but if people who are decades older can come through this, then I feel like I should be able to too.
I’m excited for you being almost one year off treatment! That’s a giant milestone. And you’re gonna get through this, I’m believing in you.
This is so weird but I was actually diagnosed a day before you in 2017. Unfortunately as you know, anxiety of a relapse is still very real but we all gotta take it a day at a time. I felt like life was so very unfair when I got diagnosed because my type of cancer typically affects men and middle-aged people while I was 31 and a woman so I can't even imagine what you must have felt going through this just as your adult life was supposed to be starting... You seem like you are handling with a lot more grace and maturity than I would have if last year was anything to go by. I was definitely not my best self last year. I hope you will get through this too so I'm sending you all the good vibes your way.
We all deal with things are own way, and we deserve that. It’s okay you weren’t your best self and no one deserves to tell you any different.
How did the original doc mess up so bad?
Like the person below said, horses not zebras. Plus they’re rushing people outta there as much as possible. Idk honestly his personal reason. I’ve actually ran into a lot of bad doctors (not at this hospital, thank goodness!) I wish it hadn’t been so rough but it is what it is.
I don't think the horses v zebras thing holds up here. A young person, with these symptoms should be indicating Leukaemia to the Doctors. Did they take bloods? If so I fail to see how they missed it for 4 months. Anyhoo, good luck, from what you've said it seems you have been through the worst now if your BMT was successful. All strength to you.
AYA patients are the most ignored. Especially females. It’s a lot less common in teens and young adults and especially male doctors are statistically less likely to believe females, especially AYA female patients. Plus most regular doctors will never see a pediatric patient with Leukemia. So they’re looking for horses. But he did a terrible job because there were horses there too (the pneumonia especially)
Was this Hurricane Irma?
Yes I’m pretty sure it was.
First, you are a brave person. I am 18 and I can’t imagine how tough it is to endure such stuff in this age.
I have one question. How is your life outside the cancer treatment? Do you have friends, a loving family, hobbies, studies etc.?
My parents are by my side all the time, to the point it can feel very smothering although I know that it’s coming from the right place. But when you live in one small room with two people constantly worrying and watching over you for months on end it can become a bit much. I’m someone who needs my space even though I do like hanging out with people. Right now I can’t really leave out anywhere. I have to stay on my floor of the Ronald McDonald House if I’m there and can basically only go to clinic or the park at times it’s uncrowded (or like walk around the building.) that’s really annoying. I color a lot, and play the Sims. Been thinking about streaming on Twitch but I don’t think I’d be the best. My two best friends happen to live up here (I live 5-6 hours away). I’m not in college yet since I knew I couldn’t do it with transplant. My friends have been unable to visit the past two or three weeks but they’re usually pretty good at visiting, there’s just a lot been going on. Also connected with someone else from camp and she’s come visited me a bit too. But right now all my life pretty much is just cancer. It kinda has to be, but that’s fine. I’m making the most of it.
I would so watch twitch streams of the Sims if you started doing them!
Thank you 😊
Stream on Twitch, I have a lot of social media accounts I can share, have about 4K followers which might help a bit, let me know.
Thank you so much and I definitely will
Any idea how many units of platelets you used? I donate every month and I'm trying to get more of a sense for how many leukemia patients might have had bits of me floating around inside them.
Interesting fact: one unit of platelets can contain multiple donors and what you give may be split up between donors unlike blood. And every patient is different. Especially when it comes to what type of Leukemia they have, what type of complications, how low a count one can handle. And your donation may have not gone to leukemia patients at all. Tons of other diseases and trauma victims need them as well. I’ve had so many giving you even an educated guess would probably be so off. 100 maybe?? I have no idea.
Hadn't realized that a donation could be split up like that. Also, thanks a lot for sharing all this about yourself. It makes me feel good about myself despite the fact that I'm mostly laying back and watching movies then being fed snacks. A remarkably good deal which I encourage others to take up if they're ok with needles.
Hey even if you aren’t, I know a lot of people who struggled the first few times but with a reason (family members of other patients that I knew mostly) they kept it up a few times and it’s easy for them now.
Is it allowed to say best of luck? And also it's great that you are doing this?
Thank you! And I’m just hoping to inspire others, as we all should.
What has been the scariest part? And when did u feel at your lowest?
The scariest part was definitely when I developed a complication called VOD or my first ICU scare when I went to septic shock. I say this because even though the VOD was much, much worse I have no remembrance of the first 13 days or so of battling it-while I maintained almost every memory of going into septic shock. I still have a lot of recovering to do from the VOD though. But waking up in the ICU was terrifying. That was probably the worst time for me where I felt so trapped. I had been physically awake before but not really cognitively. The first day waking up I had a nurse who I’ve posted about that really broke my confidence a bit. I felt really stuck and I was extremely heavy and puffy from the fluid build up. It was bad.
Puffy me being graciously given some gifts by Kendra Scott since I had to miss the Kendra Scott Hospital Prom
Damn. You are so tough. I just watched my mom die of septic shock a couple months ago. It was the absolute worst thing I could ever imagine happening to someone. She went to the ER with a lung infection and within 3 hours all her organs shut down and her heart was at 20%. She was put on several antibiotics, a feeding tube, and a ventilator. She somehow survived for 2 weeks. But with no blood flow, she got dry gangrene on her hands, feet, ears and nose. She had DIC which if when your blood clots and doesnt clot at the same time. Finally was diagnosed with menengitis. The last straw was when they were going to amputate her arms and legs. Her face turned black and practically fell off. It was the absolute worst torture I have ever even considered.
I’m so sorry you had to witness that as the last memories of your mother. You’re a great child to stand by her in all of that. It must’ve been painful for both of you, I really you weren’t alone. Thankfully during my septic shock they were able to control my blood pressure eventually with no permanently bad damage. You’re tough too, hopefully you don’t mind that I added you and your mom into my prayer journal.
First of all , you're a brave one! And my question is.. how'd you feel when you knew you had cancer, what were the thoughts running in your head?
Thank you to begin with! Honestly, and not many people are probably going to share my experience, but I was very relieved the first time. I had already pretty much figured it out in my head and this confirmed I wasn’t crazy. Also I had been in a lot of pain and suffering for a long time. Thankfully they could do something about it that hopefully would let me get better.
The second time I also already knew because my hospital kinda screwed up some stuff but it wasn’t in the same way, it’s just I kinda figured it out from my blood tests that they weren’t paying attention to and when I finally spoke up about it we got the relapse diagnosis. But it was definitely harder to deal with. I began to wonder if the last six months was a waste and I was very heartbroken I had to give up everything I had for so long to go and get chemo again and then leave five to six hours from home for around 100 days for a bone marrow transplant.
How are you and your family managing the costs?
We’re doing Okay. My mom’s school she worked at helped with some of the traveling and initial setup costs with fundraising. I had my dad’s insurance and Medicaid (since I was adopted) the Medicaid basically paid the copays and what our insurance company didn’t cover which wasn’t too much. Medicaid expired at the end of February since I was 19. Luckily we already hit our deductible (transplant cost a ton, so did the ICU drugs and stay to keep me alive, etc.) so no more copays and our social worker is great at finding us grants to help with the smaller stuff. Ronald McDonald is cheap. They ask for $30 or $40 a night but if you can’t pay it you don’t have to. Luckily our insurance will pay for some housing costs. People have also been generous with food gift cards for my parents and an organization called CURE and another one called Rally supply meals every now and then. CURE at least twice a week and Rally atleast once every other week. They also have parent bands which give them 25% off in the cafeteria.
They focus mainly on pediatric cancer, but since you were diagnosed as a child you may still qualify. If your social worker hasn't turned you on to Alex's Lemonade Stand Foundation yet, check them out.
I count as pediatric cancer since I was diagnosed at 17 and it’s Acute and I’m treated by a pediatric hospital. I follow them and idk if I’ve used them or not.
They provide some travel grants for families and other services.
A close friend lost a toddler to hepatoblastoma and they were wonderful with my friend's family.
Praying for that lovely little family I’m so sorry for their loss. Luckily our insurance plus the money given to us from my mom’s old school’s fundraising initiative and CURE and Ronald McDonald covered most of that.
What do you do in your spare time while at the hospital? Do you play any video games etc?
I have the Oregon Trail travel sized game I play with. I do what walking I can. I color some adult coloring books and play Sims 4 on my computer. And probably way too much time on my phone.
Awesome, thanks for sharing! Fingers crossed your transplant stays complication-free 🤞
Thanks. It’s definitely not complication free but it’s a lot better than it could be.
I've read your story, and I want to know if you feel any bitterness towards the doctor(s) who failed to diagnose you.
I was misdiagnosed as epileptic at 39 because I kept spontaneously passing out, but it turned out to be menopause with vagus-vagal reaction. I always felt that it was hormonal, but neurologists poo-pooed and put me on ever-increasing anti-seizure meds that fried my brain. I had 3 little kids. Lost 3 years of my life and am bitter AF.
Are you angry and bitter?
I’m not really angry or bitter about it. Sometimes I do get pretty frustrated looking back but I think it’s more about not having the answers to why it happened that way. But I’ll admit I know a few times I’ve thought about it or started talking about it and definitely felt a lot of anger towards the situation. But I try not to stay that way.
First, great job in handling this, you got this. Second, once you beat his, what are your long term plans? Or are you kinda handling this in small bites?
I used to want to be a biomedical engineer, but even though that’s still somewhere in my mind, I’ve definitely been thinking about child life specialist a lot more: and I might go back to 911 part time so I can do college classes full time at a satellite campus in my town. But we’ll kinda just see how the cookie crumbles.
It's funny how our plans change over time when life changes our priorities.
Definitely, life can change in an instant and then you have to mold into it.
Don’t you just HATE bone marrow biopsy’s?!
Thankfully I’m still treated as a PEDs patient and get sedated each time
In Washington state they sedated me but now in Utah and they’re sadistic!lol
Sorry about that! I’m scared for adult world partially because of that reason. Hopefully they’ll still sedate me at request but I’m prepared now after reading all these replies not to expect that necessarily. I’ll just have to not sleep the night before and take a Benadryl or something lol jk, that’s not a good idea.
Why do they sedate peds patients but not adult patients?
Adult patients can always request sedation, but kids tend to move a lot more and get a lot more scared in those situations. They also have thinner skin and a harder time dealing with pain and a lack of understanding sometimes. So it’s just a policy to sedate pediatric patients, even older ones. I’m sure I could request one unsedated if that’s what I wanted.
If we wanted to send you goodies or donate is there a way that we can? I am sending massive prayers and good vibes already!
PM me on here or using my instagram account
I have the kit from the be the match bone marrow transplant program. I just need to get over the final step and send in my swab. Any words of encouragement for me ? I haven’t had one friend agree to do this with me for whatever reason and it’s gotten me hung up a bit. I understand it’s a bit daunting to go thru with all this but still...
Do it. From what I’ve heard it’s relatively painless process nowadays if you do get picked (not everyone does) and you are changing someone’s life forever, hopefully setting them on the path to a cure.
I've never been through anything that tough and I don't know where the strength would come from to get me through it.
Where does it come from? Where would you be without it?
I have no idea. I’m religious I know everyone isn’t but I always say that it has to be strength from God. I’ll admit I was weak before cancer. Scared all the time of the future and what might happen but when I was diagnosed it was like He told me everything will be okay. And so far, it is. And I use the strength given to me everyday. I’ve always been a happy person and it’s not hard for me to find joy in the bad so that helps a lot too. I don’t know where I’d be without it
Hi there, thanks for sharing your story. I’m considering undergoing a bone marrow transplant of my own at some point because of my own health problems, and I was curious as to what you think the hardest part about the transplant was/what the worst side effects have been? I know it’s different for everyone but I’m curious to hear your perspective. Thank you again, and good luck.
I mean my worst complication is extremely rare and deadly and you will likely hear about it but don’t stress (VOD) and of course, like me, there are plenty of survival stories. The diet and isolation is going to take a good deal of getting used to. Boredom and Loneliness will kick in. Reach out to your friends, sometimes they just don’t know how when or what to say. Do and buy small things to do and that will take up some time. Join online support groups if you want. I know a few hit me up. Thank you 😊
Does donated bone marrow require anti rejection drugs short or long term?
Definitely short term. It usually is about 6 months. I know if you get GVHD (which it looks like I probably do, part of what is making me inpatient rn) it’s usually about a year. It can be longer based on symptoms and just personal treatment.
What is a bone marrow biopsy like? Also just wanted to say thanks for doing an AMA and good luck with your treatment.
Well I am kinda putting bone marrow biopsies and aspirations as the same thing when they aren’t. Biopsies are not done as often and include a lot more testing and depth I believe. I’ve never done one unsedated as I’ve always been treated as a pediatric patient. But they basically just insert a giant needle in your hip and then take some fluids out. Then they test the fluid.
Have you spoken to survivors? I’m just asking because we actually have a pretty similar medical history, I was diagnosed with aml when I was 7 went into remission after chemo, but when I was 8, and then relapsed. I then had a bone marrow transplant from a stem cell donor, and made a full recover and afterward had a relatively normal childhood. I’m now in college living a normal life. I know it’s really hard, and it is something that will stick with you forever, but it doesn’t have to define you, and it’s possible to get back to normalcy. I’d be happy to answer any questions if you wanted
I’ve been in a few online support groups but through camp I met a ton of survivors as well! I’d love to chat if you’re ever free! And I’m sooo happy you’re doing so good so many years later. Most of the kids at camp had been going for years as well, living pretty normal lives at that point and even a lot in sports. It was a great thing to see, even though I sometimes wished some were more recent because I was a senior and everyone else who was seniors were like that. That’s why me & my best friend got so close. We had more similar timelines. She only knew people a bit better because she went on the DC trip as well as she went to the teen retreats which I was hospitalized for as well.
Yeah, I got it a weird age, cause I was old enough to clearly remember everything, but I was still a kid and i was able to put my life on hold without many consequences. Which is a luxury anyone in high school or older may not have. If I were to give one piece of advice it’d be to be open about your emotional experience, when I was a kid I suppressed everything because I just wanted to get back to being normal, but then when I was a senior in high school I had a scare when we found a benign tumor in my arm. Immediately I lost it because all my surprised fears and emotions just came back up, I ended up having anxiety and depression issues that are much better, but I’m still fighting with. So just keep in mind that while you may be focused on getting your body cancer free, to not shove aside your emotional health.
Oh I definitely don’t shove it aside. Me and my two best friends use each-other basically just to get everything out. We understand each other better than anything. We can scream and cry for a few minutes and then ten minutes later be talking about what’s for dinner and what movies for a sleepover that weekend.
What is the cost of your medical bills and how much has any insurance been of help during this harrowing ordeal?
Insurance has helped a lot. We met our deductible just in time for my Medicaid to expire as well. Grants and my mom’s school has had a few fundraisers which really helped make a difference.
Why are you so amazing? There’s my question, but good job for your courage and fortitude. You and your fellow cancer fighters got a raw deal but your bravery and stamina are inspiring. Also, thanks for sharing...and F C!!!
Thanks. Of course it takes fortitude and everything but just like everyone else-we are doing what we can to survive. There are days I hate being called brave. Others it makes me feel great and stronger. It takes a lot out of you, and at the end of the day I’m always appreciative of people like you that recognize how hard it can be to make it through a simple day.
What's your favorite color?
Baby yellow or teal
Nice my Dad just got a sct and his favorite color is baby yellow too!
That’s awesome! I hope he’s doing great!
I would like to donate to any org that helps with pediatric cancer. From your experience where would you like to see money go?
CURE Childhood Cancer. They are based out of Ga and currently work mostly for Ga families but they are working on a genetical trial that genetically tracks the child’s specific disease to give that child the exact treatment plan/protocol that will work best for them. This trial could be an absolute game changer into how we approach cancer in general, especially since no two people or instances of cancer are the same.
What was the most routine altering symptom of your cancer/treatment? What most prevented you from living a ‘normal’ life?
Well, definitely the isolation and hospitalization. I couldn’t go to school, trips, plan random weekends for my friends as it was usually hard for them to get to the hospital-then an hour away from most of my friends, the ones my age many without transportation. The older friends I had with work, kids, lives, and responsibilities. Never got to see my pets much except for the short breaks at home. Now I basically live 5 hours away from home for 100+ days. No seeing my pets or the people I’m usually around. I do have my two best friends up here and another one I’m casually getting closer to. All have experienced cancer themselves. (Two were from camp-one was connected to me by an old teacher.) I’ve had a few other visitors along the way as well but of course it isn’t the same. I’m not allowed to go anywhere really, even when outpatient because of crowds and germs. I can’t have outside/restaurant foods/beverages. It’s just a whole different life. It isn’t this experience for a lot of people-it’s just how mine specifically has to be handled. I did still make graduation though.
Hey, Sweetie! Thanks for the AMA.
Have the bone marrow biopsies become less and less invasive since you started?
I get sedated for all mine fortunately 😂 I got my first one at the hospital I’m at not too long ago and they used a different spot I had a lot less residual pain and side effects.
Whether willingly or not, now you sound pretty advanced in the medical field. Don't you have any plans to tie your future career with that?
I thought for a long time about biomedical engineering research but I now think I want to be a child life specialist who works with kids in explaining what’s going on medically in a way they can understand. They also plan events to keep kids happy and play and connect with them. There are very dark moments in the job but there are some great ones too.
Hi! I’m an occupational therapy student who just did a project advocating for better and more cohesive AYA cancer survivorship care. I was wondering if you have worked with an OT at all and if so, what kinds of things did you work on? Thank you so much for sharing your story!!
Most of the work I did with OT was during the time I don’t remember when I had VOD and couldn’t do much myself as I’ve been told. I don’t really know what they did with me then unfortunately. They have given me a resistance band and some exercises to use with it in order to keep my upper body strength, and work out my shoulder since I’ve had some problems with it after pulling it trying to push my pole up the hills in the garden too much.
What do you plan on doing once you’ve got the all clear to go home properly and get on with your life? Fellow post-BMT girl here- though I had ALL that relapsed after my BMT unfortunately, luckily I had the chance to have CAR T cells which have placed me in remission again (woohoo)! Wishing you the very best of luck in recovery, hit me up if you ever want to chat with someone in a vaguely similar situation. I had initial diagnosis at 15 and am now going on 19, so it’s been a while! xox
Thank you so much. And once I’m better I think I’m gonna work part time at 911 and go to the satellite college campus in my town. I think I wanna learn be a child life specialist, and I’ll probably message you sometime.
And take care of yourself when you’re stressed. Step out for a minute when you have to. You don’t want to lose control of your emotions with him because that will just make it worse for the both of you. Spend a weekend alone or take a spa day when you can. Don’t lose contact with your close friends. Try to maintain normalcy for both you and your dad as much as possible, although I do understand how hard that is.
Hi! I'm a nurse on a BMT unit of a cancer hospital. Out of curiosity, what kind of transplant did you get and how close where you matched (HLA) with your donor (since you spoke of gvhd)? I wish you a speedy recovery!
As far as I know my BMT donor was a 23 year old unrelated male, perfect match. I was told that miraculously I had 300+ perfect donors on the registry
How does it feel being 1000% more badass than I'll ever be? Also, what are your next recommendations on charities, from an insider perspective?
CURE Childhood Cancer is an amazing organization that helps put Georgia families but the advances they are making in personalized genetic testing for individualizing pediatric cancer protocols.
I Hope you‘re doing fine. What‘s your fav Movie? Greetings
I’m doing better than I was a few days ago that’s for sure. And Steel Magnolias. Thank you 😊
Hi, I dunno if you'll see this or not, but I just want to say how awesome you are for getting through everything that you have... I really admire your strength and courage.
My Father was diagnosed with AML at the beginning of the year and had the bone marrow transplant about a month ago. I read that you went into septic shock and had VOD. Did these things happen while you were recovering from the bone marrow transplant or before you got it?
Also when someone going through cancer treatment is complaining about how awful they feel, what are the types of things we can say back to help?
Any other advice you have for a caregiver of a cancer patient?
The septic shock was the last round of the first time I had cancer, so way before my transplant. The VOD came a few weeks after the transplant, not too long after and was partly because of the preparation chemotherapy, medications, etc.
And it’s not really about what you can say back. It sucks and they don’t need the constant “oh it could be worse or it will get better...” The main thing is just to LISTEN to them. Let them know you hear them. That you wish that they didn’t have to go through it. BE THERE FOR THEM. Just show them how much they mean to you. I know it’s hard but sometimes just be there to watch their favorite shows, play their favorite games, and act like the big “C” isn’t there.
I hope your dad is doing good. I’ll be thinking and praying for all of y’all.
Umm.. what? No. I love my life. And I’m not sure that this is the appropriate place for this type of question.
What were your earliest symptoms where you felt something was amiss? What made you decide to go visit the doctor? How long did it take the doctors to diagnose Acute Myeloid Leukemia?
I hope you get better and are able to pursue your dreams! BTW, don't hesitate to ask people to wash/sanitize their hands, especially when you are at high risk for infection.
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