#rhabdomyosarcoma

[good-in-space]

This is my niece Ava 😍🥹 She is sixteen years old. She was recently diagnosed with (RMS) Rhabdomyosarcoma (Cancer) and faces a difficult road ahead of her and will need as much support as possible to fight for her and along side her.

Any donation would be greatly appreciated please share this as much as possible 🙏🏼❤️

[cltindia]

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[sarahdogoc80]

My Cancer Journey

Note: To protect myself and my family names will be changed. And I might leave some events vague because either I don't remember in full or for privacy reasons. TW : Cancer, Hospitals, parental abuse, suicidal thoughts, religious confusion.

When I was three I was diagnosed with rhabdomyosarcoma. This cancer is in the soft tissue of the foot and hands. It was in my left foot. When I was three I had tripped over a manga doodle. Due to the cancer making it to the bone it had started eating it causing it to be weaker thus easily broken. My mom had noticed the tumor and kept taking me to the doctors but they said it was normal swelling due to the broken bone. Around this time my parents were fighting. And my dad had kidnapped me to psychologically attack my mom. My dad would purposely drive into the driveway with the car door lock and laugh as me and my mom cried and tired to get to each other. The only reason my mom got me back was because my dad had missed an appointment my mom made months ago. That appointment would have told them I had cancer. But at the time they didn't know it was cancer but it was an important appointment my dad had technical kept me from. So my mom's parents managed to get a lawyer and get me back. When she got me back I had lice and a bad diaper rash.

When my mom found out I had cancer she was extremely vulnerable and my dad realized how bad he messed up so took advantage of my mom to drop the charges as he was looking at prison time. He pulled the I want to be with my daughter before she could die. So all he was charged with was parental interference.

He loved me so much that when they were told my parents they had to pay for the first round of chemo. My dad didn't want to pay for it and insed wanted to pay for my mom's fertility treatment. So he guilt tripped my grandma (she felt responsible for my cancer because I broke my ankle at her house. ). So my dad told her she had to pay for it and acted like he didn't have the money. So my grandma sold her car took up a second job and even begged her mother for money. To note my great grandma gladly gave my grandma the money as it was for my cancer treatment. My grandma just didn't want to ask he mother for money because she had to financially help my grandma though her whole terrible marriage. Because my grandpa was an ass at the time. But once my grandma got the money she was helping my mom clean my parents bed room and they found around 100,000 dollars in 2003 money, in shoe boxes. When my mom confronted my dad he said it was for my mom's fertility treatment because he needed a son. So because I was born with the wrong genitals my dad didn't care if I lived or died. And just used me as a pawn to hurt my mom.

My dad was hardly there my whole treatment. My mom said it's because he was always working which is true but he also just doesn't view me as valuable because in Mexican culture the boys are what matter. My dad later in my life said he wasn't going to waste his time on me because I was a girl and all I was going to be was someone else wife. My mom did get pregnant and she had my little brother. I wanted my brother. I even told the nurse who was doing the ultrasound I hope it's a boy because if it was a girl I'd throw her in the trash (I was three I didn't understand what I was saying... But I wonder why I had this opinion hmmm). Dispite dying of cancer I wanted to help my mom with my brother and we were inseparable.

During my chemo we found out I can't handle regular anesthesia. We found this out after the first time they put me under to I think either to do a biopsy or drill into my hips to make sure the cancer wasn't else were. While I'm a twilight state (my eyes were closed and I wasn't aware) I tried jumping out the car window on the highway as it started wearing off. My mom had to hold me down in the backseat because I kept insisting I had to jump out the window. This so a genetic disorder which mostly effects people with blue eyes. And while I had brown eyes my mom had blues eyes and also had this problem. An example is my mom while out for her hysterectomy she "woke up" during her surgery and said she had to pick me and my brother up from school. The doctor has to hold her down because she started getting violent. She wasn't aware of this and doesn't remember doing it. But we have this problem so when they had to put me out for surgery or just to get an MRI as I was very combative thought my whole chemo process. They had to use propofol (the stuff that killed Michel Jackson). And because this was 2003-2006 they had to have one the the nurses pump the breather by hand.

When my parents were discussing my treatment plan the children's hospital almost took my parents to court because they didn't want to do radiation treatment and just chemo. My parents said if they did radiation it would destroy my leg and foot and they'd have to amputate. Which was unacceptable to my dad. My parents wanted me to keep the foot and leg no matter what. As my dad didn't want a physical disabled kid. So they went with this very experimental treatment plan. Due to this being experimental my mom let them write about my case so long as they censor my name. So my treatment was used to help other kids.

Unfortunately in my teens I felt extremely guilty about this because I am in so much pain and the thought of this being inflicted on another kid hurt me. Infact I came face to face with this . Dispite my cancer being rare in 10th grade a girl in my school system was diagnosed with the same cancer and I had a mental breakdown. Because I met her (thought I didn't tell her I had the same cancer not that my research was going to be used to help her) but seeing her so hopefully and happy that she might survive. I just cried and cried because I didn't want this girl to be in as much pain as I was in. Especially because the opioid epidemic hit... So all I could get was lyrica and while it helped I was still in chronic pain. And the thought of her having to endure this just broke me. I started hating the whole medical system, resending I was considered a success case and that because I lived it was concerned a good treatment plan. I wrote several suicide notes outlining my pain and how the pain controlled and ruined my life. And I just wanted to kill myself because I thought if I did then they would have to consider it a failure and rethink how they treated it. I was in a dark place and I thought i would save this girl the pain if I just died. I never went thought with it though because my brother needed me and even though I was in an awful home life. I cared more about him then some girl I didn't know. I moved away from my home town so idk if she even survived but I hope she did and I hope they treated her better. And she is happy.

Back to 2003. I was very combative my whole chemo treatment causing me to have to be sedated or held down alot. While I didn't know the full scope of my ordeal I knew the chemo was killing me. And to watch my mother hold me down while injecting me with poison caused a lot of trauma. And because my parents hated therapy I never went after chemo even though the doctor said I should. But that also damaged my relationship with my mother because I knew the chemo was hurting me and to also see doctors doing this made me resent doctors my whole childhood. Thought because of this headstrong attitude I also told the hospital I didn't want a wig. My mom said I said quote "I don't care if I'm bald the other kids don't have to play me." Or something along those lines. Now I called a couple years ago so I don't remember which organization it was. But I very clearly remember a make a wish type organization coming to grand me a wish. My parents were excited because hey thought I was going to say Disneyland. But when I said I wanted to go to college to be a CSI agent or help murdered children they were pissed. After chemo when I wanted to go to Disneyland. My dad said I should have used my wish then if I wanted to go so badly. I would have wished for that if I really wanted to go. Supposably this organization has an education trust set up for me. But due to a flood my parents lost the paperwork, and no bank I call or make a wish type organization I call says they granted me a wish. So I don't know what happened to that.

Something I need to note is I was a child raised in a racist house. Yes dispite me being biracial both my parents were still racist towards each other races and others. So when a basketball star I think it was Lebron James but I could be wrong as I don't know Basketball stars. Came to the hospital to meet the children and their parents. My dad was a huge basketball fan. So when LeBron tried approaching me to give me a signed basketball I ran to my parents and refused to take it. My dad asked why I didn't want it(because he wanted the ball) I apparently told LeBron to his face I wasn't taking the ball from him because he was black. All the parents and nurses stared at my parents who left with me in "shame". When really it was because I did that out loud and embarrassed them and didn't just take the ball. Note: they didn't correct this racism at all. I had to correct myself and learn about other races when I got older. So I don't still hold any of these beliefs but I am being honest with how I was as a kid.

My parents did take one vacation on their own dime (I think) to Canada to go visit Hershey Park in the beginning of my treatment. But otherwise I was either at the hospital or home

My mom also started cheating on my dad at this time and bringing home her partner when he was at work. Looking back this really grosses me out. She just had my brother and I was dying yet she couldn't control herself for a couple years. And worse she bring them over to the house. I have no clue how she squeezed in cheating after having a baby with digestive issues and the other one is on chemo. But whatever.

My chemo is a blur and mostly just remember it as trama.

I guess a "funny" story is at the start of my chemo my grandpa noticed I wasn't eating and kept throwing up. So when he went to get my brother medication from a Native American friend of his (note: this friend was a Native American herbalist medicine doctor of some kind (sorry idk the correct term) in Arizona he gave my brother essentially probiotics (before they because main stream) to give him some gut bacteria my brother was missing. Honest to God they were going to cut my brother open to see what the problem was. And a week before the surgery my grandpa started giving my brother the powder and his stomach problems stopped.) Something else he got from this friend was a weed brownie. My grandpa was a hippie so he knew what weed was and knew what he was giving me. After I ate it my mom said I was eating like I hadn't in over a year, was laughing and spinning around. My mom asked what was up with me and my grandpa (her dad) laughed and said it was a weed brownie. Note my parents are both huge pot smokers infact my nickname is weed related. Lol. My mom was pissed because she was worried about it coming up in a blood test (the hospital never found out).

I also hate morphine. I still do. I would only take Tylenol at home for the pain. But at the hospital that was what they give me. This is were I learned to lie. Because I have a distinct memory of a nurse coming in to ask if I was in pain and that she'd make it stop. No one listened when I said as a kid I didn't like what they gave me for pain. So I started lying about not being in pain so they wouldn't give me morphine. No matter how much pain I was in I hid it so they wouldn't give me morphine. So that was a disaster. They started giving me I think liquid Percocet when I was in remission which I liked because it didn't make me feel like death and actually helped my pain.

Once they removed the tumor they tried giving me a walker and wanted me in physical therapy. Now I don't know if this was because the doctor weren't 100 sure about what they did to my foot and how it would affect me. Or the Physical therapist didn't get some notes. But they were trying to get me to do stuff I just physical couldn't do anymore or were extremely painful. So I started just sitting there and refusing to to anything because no one was listening and I wasn't going it be put though this. So I stopped going and taught myself to walk again my mom said. As for the walker they gave me I used it once then threw it behind our couch and never used it again.

Now I need to note I am an atheist (specifically part of the Satanic Temple) so I'm not trying to make this a religious thing but I'm telling you what I experienced. During my chemo another family member had his cancer come back. He was named Uncle N (not saying his real name). I became very close to him because we could understand each other. I remember we'd eat grape popsicles together. He was very old when I was born. He is like my great uncle. But the night I went into surgery he died. And even is believed to have died during my surgery. I was pronounced legally dead for 5 seconds during the surgery. I remember watching my own surgery. Then Uncle N came in. I was excited to see him. He told me it was his time to go and wanted to say goodbye. He told me to not give up. That it wasn't my time. And that everything would be okay. That he would watch over me. I was a little confused and sad and he told me he loved me and it was about time to wake up. I woke up with my family surrounding me smiling but I started crying saying uncle N died. They were all confused and said he was fine. My mom left her cell phone in the car and went to go get so I could call him and tell him they got the cancerous tumor out. When my mom came back she was crying and said uncle N was actually dead. My mom then asked how I knew. I said he visited me before I woke up. She wasn't really listening and everyone stepped out to cry. The nurses tried making me feel better all pitched in and brought me a fish cake later that day. Idk what I experienced. Idk if it was just the brain doing it's thing. But it felt real to me.

This is all I can write right now as I am crying. But if you have any questions feel free to ask. And I will definitely be going into detail about my life and how I was living in cancer's shadow. If you made it though thank you for listening.

[lushuponatime]

Crackle Bath Bomb from Lush

Today I am reviewing the recently released Crackle Bath Bomb from Lush’s 2024 World Bath Bomb Day collection.Out of the 29 bath bombs, Crackle is the only charity one. 100% of the sales price (minus government tax) will go to Dexter’s Arc, a children’s cancer charity funding non-animal testing research into Rhabdomyosarcoma. You can find out more about Dexter’s Arc (here).Just like me, Dexter…

[drpedi07]

Toronto Childhood Cancer Staging criteria for Rhabdomyosarcoma Calculator

Once the type of tumor has been identified, doctors need to assess, as accurately as possible, how much of it there is and where it has spread.

[chetanagblog]

Rhabdomyosarcoma Market size was valued at US$ 1.66 Bn. in 2022 and the total revenue is expected to grow at a CAGR of 3.7% through 2023 to 2029, reaching nearly US$ 2.15 Bn.

[mindblowingscience]

Scientists have successfully induced rhabdomyosarcoma cells to transform into normal, healthy muscle cells. It's a breakthrough that could see the development of new therapies for the cruel disease, and it could lead to similar breakthroughs for other types of human cancers. "The cells literally turn into muscle," says molecular biologist Christopher Vakoc of Cold Spring Harbor Laboratory. "The tumor loses all cancer attributes. They're switching from a cell that just wants to make more of itself to cells devoted to contraction. Because all its energy and resources are now devoted to contraction, it can't go back to this multiplying state." Cancer isn't a monolithic thing. It arises when cells from different parts of the body mutate. Rhabdomyosarcoma is a type of cancer that's most often seen in children and adolescents. It usually starts in the skeletal muscle when cells therein mutate and start multiplying and taking over the body.

Continue Reading

[tragicallyuncreative]

Chapter five soon queen? Hope all is well!

Consider this my T-minus 12 hours or sooner announcement!!! I WILL be posting Chapter 5 tonight. Whether it be before or after midnight, I can't tell you, but I have tomorrow off and nothing due in the next 24 hours so I'm determined not to sleep before it's posted.

Thank y'all SO much for being so patient. All is well, just been so insanely busy that I haven't had a time to breath, let alone finish editing the chapter. I have learned so much in the last few weeks during my ICU rotations. Spent today managing hemorrhagic shock in a GI bleed patient (original bleed had been repaired and was about to be discharged when it was suddenly like a massacre 😬) and we gave 2 units of blood over the span of 1 minutes through a line in his internal jugular, then watched as they did a bedside emergent colonoscopy and put in 2 endoclips. Coolest shit I've seen in a while (well, not for him, poor guy). @fangirl-docintraining have you had your ICU rotations yet? As my fellow medical nerd who gets so excited/ enthusiastic about new stuff, you will love it!

The biggest reason this chapter has taken so long is my balance between keeping it completely accurate to 1960s medicine vs. incorporating modern elements in a realistic way because it's just hard not to and I really want to keep my plot/ outline intact. If anyone wants clarification about what elements are modern or not that I don't specify in my chapter notes, don't hesitate to ask. There are two articles that I would really love everyone to read before or after reading my chapter. For years, I have been so passionate about St. Jude Hospital and several specific doctors and the work they did/ continue to do to treat pediatric cancer. Dr. Emil Freireich essentially eliminated bleeding as a cause of death in leukemia patients after experimenting with his own platelets and finding the correct way to infuse them. He then proposed that the method of treating tuberculosis (using multiple drugs at once) could also cure leukemia. In 1962, pediatric leukemia was a death sentence. People thought it was crazy that Danny Thomas and these doctors were stating that they would find a way to cure it. Kids diagnosed would die within weeks of diagnosis from infection or bleeding to death. Their experimental treatment of combining two or more chemotherapeutic agents was seen as inhumane by many doctors, who thought that would make these children sicker and it was better to let them die peacefully. To everyone's shock, they saw success. This treatment was trialed in the early 60s, but didn't become something doctors would refer patients to St. Jude to until 1968ish. In 1970, the man behind this extraordinary discovery, Dr. Don Pinkel, was able to officially proclaim that childhood leukemia was no longer a fatal disease, with the cure rate at 50%. Today, ALL has a 94% cure rate, but the treatment remains harsh and lasts approximately 2.5 years. And despite all the hard work of researchers, other pediatric cancers such as Wilm's tumor, Ewing's sarcoma, osteosarcoma, rhabdomyosarcoma, medulloblastoma, DIPG, and more have high relapse rates and higher fatality rates (DIPG is something I encourage everyone to research and support higher funding for- a pediatric brain cancer with 0% survival rate). I actually went to a conference at St. Jude when I was 19 for childhood cancer advocates as I was a top fundraiser that year and interested in a future career there. I cannot say enough positive things about it!

So obviously, my story will deviate the timeline a little and the fictional Children's Hospital of Oklahoma (which in reality was not established until the 21st century) will be offering this experimental treatment in '65. Some of the medications and medical devices I include were not available until after '65 (for example, ports/ central lines in this particular model were not a thing), but I also make a point to use meds that were more common during the time, not include certain devices such as heart monitors, pulse ox, etc.

This has turned into a really long ramble. The point is, I hope everyone is ready to learn a lot this chapter and I encourage you to let this motivate you to learn more about childhood cancer, the fact that it is not as rare as many think, and that it is severely underfunded.

So far, this chapter is 15K words. My last few hours of edits may result in more or a little less. So get comfy and settle in when it's time to read- it's a big one with a lot going on!!

[partisan-by-default]

Following three rounds of chemotherapy, a 2-year-old Englishman has become the youngest patient ever treated with ‘nanoknife’ technology.

This still-experimental cancer treatment helps to neutralize tumor sections via electrical currents.

George, from Camden, was diagnosed with rhabdomyosarcoma—a cancer of the liver and bile duct last year.

Dr. Sam Godfrey, science engagement lead at Cancer Research UK spoke to the BBC about the treatment, calling it cutting-edge, and explaining how it uses electrical currents to ensure surgeons get a better margin of clearance around a tumor.

This “cutting-edge surgical treatment will inform the treatment of children around the world,” he said.

“The surgeons managed to remove all the tumor and had clear margins all the way around the removed section of his liver,” said George’s father, Johnathan. “This was the news we’d been hoping and praying for.

[good-in-space]

Gonna bullet point this and pin, since my original post was getting a little too long.

My 16 year old niece Ava was diagnosed with Rhabdomyosarcoma, a type of soft tissu cancer, just over a month ago; after a previous misdiagnosis of Bell’s Palsy when a growing mass was discovered behind her left eye and cheek.

They caught it early but it’s also aggressive, and she has a genetic mutation that makes this particular type of cancer more aggressive.

She is receiving weekly chemotherapy treatments, but has had some setbacks including being hospitalized with a fever; and during a surgery to preserve one of her ovaries her bowel was nicked and had to be repaired.

The doctor’s are giving her a 50% chance of survival, as per Ava’s request, we have asked for honest and unfiltered information. She is not doing so well, already lost so much weight and hair, not eating much. But getting a lot of support and treatment, and encouragement, but it is a grim present.

Ava’s mother and ex-stepfather have had a contentious divorce over the last two years, including an ongoing custody battle with Ava’s younger sister. And Ava’s adopted older sister died of a rare brain tumor just over a year ago.

She’s had a rough go of it during her short life. I’ve done my best to be positive and loving influence. Ava is strong, has always been as feisty as she is sweet. She wants to live.

Any donation would be greatly appreciated please feel free to share the link. Thank you.

[allienoelle93]

At this time, Lorelai needs round the clock care. Any way you could help would be amazing. Please donate, like and or reblog.

[cltindia]

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[terry-on]

Asking for help

My 15 year old daughter was recently diagnosed with a very rare ovarian cancer called Sertoli Leydig with Rhabdomyosarcoma. It has spread to her stomach and she has an extensive chemotherapy schedule. Paid vacation days are almost out and Family Medical Leave is unpaid. I am humbly asking for any help you can give to me and my family Please share even if you can’t donate. Thank You 🙏❤️‍🩹

[drpedi07]

Toronto Childhood Cancer Staging criteria for Non-rhabdomyosarcoma soft tissue sarcoma Calculator

Non-rhabdomyosarcoma soft tissue sarcomas (NRSTS) arise in the soft tissues of the body and account for less than 5 percent of all pediatric cancers.