All-Star Help!!! Prayers & Help Me Reach Cea Mom Amy Elliot!! Asap!!

[LegacyQueensAmanda]

Four years ago, I reached out to my fierceboard family for prayers. (If you know me, I was called LegacyShaquita, lol). I do not post much anymore, so many of you do not know me. Four years ago my dad had colorectal cancer and the support from this board was amazing. Now... I need your help again.

Many of you may know Amy Elliot, a mother at Cheer Extreme. She has a very rare cancer called Leiomyosarcoma. Only 1% of cancer patients have this, and only 3% of that group survive. It can attack anything in your body except for your bones...

Last week, my dad was diagnosed with this very rare cancer. He recently had surgery to remove a tumor which they thought it was NOT cancer. Well, it was.. In a few weeks he will start radiation everyday for 30 days, then have a surgery to remove his entire left lung and pulmonary artery. Following this, he will go through chemotherapy.

Not only am I desperately reaching out for thoughts, prayers, positive vibes, or whatever you believe in. But I would LOVE to reach out to Amy Elliot. Please, if anyone has information on how to contact her via Facebook, email, anything, I would love that.

EDIT!!!: I have been connected with her son Bryce. Thank you!

 

[FierceIsTheName]

Maybe @mstealtoyou could help you out!

Prayers to you and your family!!

 

[CEAisstronger]

Or @12stepCheermom


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[12stepCheermom]

@LegacyQueensAmanda I'm so sorry to hear about your father. Your family is in my prayers.



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[LegacyQueensAmanda]

I got into contact with her son! Thank you! Definitely prayers needed.

 

[mstealtoyou]

I definitely remember you sweetie, and I will keep your Daddy in my prayers!!!

 

[Senior5Allie]

I'm so sorry you all are going through this. I will keep you all in my prayers. May you all stay strong and fight!!!

 

[MyDaughterCheers]

I'm sorry to hear about your dad. Although my cancer originated in my lung, I had a left lobectomy almost 5 years ago and would be happy to answer any questions you would have about that part of it.


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[xtremeteal4life]

Four years ago, I reached out to my fierceboard family for prayers. (If you know me, I was called LegacyShaquita, lol). I do not post much anymore, so many of you do not know me. Four years ago my dad had colorectal cancer and the support from this board was amazing. Now... I need your help again.

Many of you may know Amy Elliot, a mother at Cheer Extreme. She has a very rare cancer called Leiomyosarcoma. Only 1% of cancer patients have this, and only 3% of that group survive. It can attack anything in your body except for your bones...

Last week, my dad was diagnosed with this very rare cancer. He recently had surgery to remove a tumor which they thought it was NOT cancer. Well, it was.. In a few weeks he will start radiation everyday for 30 days, then have a surgery to remove his entire left lung and pulmonary artery. Following this, he will go through chemotherapy.

Not only am I desperately reaching out for thoughts, prayers, positive vibes, or whatever you believe in. But I would LOVE to reach out to Amy Elliot. Please, if anyone has information on how to contact her via Facebook, email, anything, I would love that.

EDIT!!!: I have been connected with her son Bryce. Thank you!

@LegacyQueensAmanda
I've posted this in another thread, but my mother also had and died from this rare cancer. We live in the same area as Amy. It actually does attack bones too if you make it as long as my mother lived (10 years which to my knowledge is still unheard of). I haven't statistically even seen someone who has survived that cancer, as the average life expectancy from diagnosis (if you're lucky) is less than 2 years. To make my mother's even more rare, she acquired it while pregnant (at 39) w/my last sister. Oh, also- that's exactly what happened to my mother; there was a growth blocking her cervix so she had to deliver her 5th child via C-section (a first for her). They said it was a fibroid and 99.9999 percent of them are benign, supposedly it was even biopsied. Several months later- bam, in her lungs. 16 major surgeries in 10 years. When they said "we just can't operate on your lungs anymore" bc she literally only had less than half of them left, it went into her intestines, then her rib cage, then her breasts..Until this date I've never heard of anyone living as long as she did. In between all those major surgeries she also had extensive rounds of chemo and radiation, and of course the complications that accompany all of them. She had some very good doctors and obviously a strong will to live combined w/the toughest heart, mind and body of anyone I know. She even still worked, YES WORKED daily in between surgeries until the last three years of her life. She died just shy of her 50th 9 years ago this April (a week after my little sister's bday and week before one of my brother's).

I understand what you're going through. I took a hiatus from college (a rather long one at that) to move back here to be with my mother and to take care of her (several years before I had my daughter). For me, college could wait, I only had one mother. I have never regretted that decision. It will forever change the dynamics of your life and I wish I could sit here and tell you that everything's gonna be ok, but I honestly have seen and went through this first hand and it's tough. It's gonna be really tough for you and your family. I don't know where you live, but if you're interested you can message me and I can give you the names of her oncologists (here in Greensboro) and cardiothoracic surgeon (he's from Duke), since he was obviously a very skilled surgeon who painstakingly cut out the tumors and resectioned her lungs as many times as he possibly could. Knowing what I know, I'm sure there aren't as many surgeons skilled and/or willing enough to do this. I don't know the size of your father's tumor, but it is possible that it's too large for that type of resectioning. I'd just hate knowing that there's a possibility I could be of help and avoid the severity of having that much of his lungs removed unless it was absolutely necessary. I don't believe in any type of Judeo-Christian "God", but my mother did and I won't deny it helped her immensely- the support group of everyone at church always bringing dinner to my father and little sister so that I could be with her at the hospital almost 24/7 was amazing. I slept on the floor of her hospital room more time than I spent at work or home. Please feel free to message me if you'd like any information and/or you need any advice. I'm a very straightforward person, bc I'm not the person who likes to have information withheld from me in situations like this bc I think it's important to have a a good game plan and you need all the info you can to do that. I've reached out to her as well here and on Twitter (through JTV). I just hope someone will feel compelled enough to see to it she at least gets my message. It's absolutely awful and I really wish you the best.

 

[MyDaughterCheers]

@xtremeteal4life, I'm sorry for what your family went thru and the loss of your mom. I wanted to tell you thank you for saying that you had no regrets about college. We are facing something similar. My cp is a senior and deciding on college. She is afraid to leave me. I have stage IV lung cancer. Right now I am healthy, with no evidence of disease. However, we are all aware that I am in a very unusual situation and that things could change at anytime. I don't want my cp to put her life on hold, but she doesn't want to have any regrets. That's not a choice I can make for her, and it breaks my heart that she has to face this. It's comforting to know that she'll be ok if she makes the choice not to leave. Thank you for your honesty and bravery in your post.


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[Mom2Cheergirls]

Prayers for strength and comfort for you and your family. I lost my mom to cancer. This is tough and it sounds like you all have been around the block on this fight before….thoughts of love and peace and goodness for you and your family

 

[coldasICE]

Praying hard for you and your family!


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[xtremeteal4life]

@xtremeteal4life, I'm sorry for what your family went thru and the loss of your mom. I wanted to tell you thank you for saying that you had no regrets about college. We are facing something similar. My cp is a senior and deciding on college. She is afraid to leave me. I have stage IV lung cancer. Right now I am healthy, with no evidence of disease. However, we are all aware that I am in a very unusual situation and that things could change at anytime. I don't want my cp to put her life on hold, but she doesn't want to have any regrets. That's not a choice I can make for her, and it breaks my heart that she has to face this. It's comforting to know that she'll be ok if she makes the choice not to leave. Thank you for your honesty and bravery in your post.


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At first they (my parents) weren't very forthcoming with us. I had to do some digging and fortunately I happened to work for a doctor at the time who was just as blunt as myself. When I went to my parents (I knew why they downplayed the severity of it, especially my mom bc she's def the martyr type-not in a bad way, that's just how she had always been-she never considered herself above the needs of her children) they finally came clean, but my dad and mom had a unique approach. Instead of waiting for an inevitable "death" sentence, they attempted to be incredibly optimistic and set small, achievable goals. They were successful, as you see how long the typical survivor rate is for that cancer, there's never an "if" just a "when".

But yes, I put college on hold (and I had already started and completed a semester at a 4-year university). It turned out to be almost indefinitely bc no one expected her to live 2 years much less 10! Then I got pregnant (near 30 at this point) and my mom got to see her first (and only as of yet) grandchild be born- she passed away when my daughter was only 6 months old. I finally went back and slowly but surely I'm almost there! I'm done w/my accociate's and working on my bachelor's.

I can't tell you that there aren't times where I feel guilty for some of the smaller things, bc I think just about everyone does.... however, I can tell you I don't feel guilty about not being there enough with her, but I can tell you who does-my siblings (except the "little" one who is now 17). They constantly live with regret for not spending enough time w/her, for not taking turns with me sleeping on the floor or chair in her hospital room, for taking their time w/her for granted, etc. You think my mom would have said yes to any of us if we told her we were quitting school to be with her?!! Hell no she wouldn't! However, I guess that's where being the rebellious stubborn type made all the difference. I know my mom would have never agreed with it, which is precisely why I never asked her. My siblings live w/regret everyday and it's very hard for them. I can't say it's the right choice for them, but it was for me. Heck, I was in the process of all this when I met my husband and when I knew we (he) were falling in love I told him that I was moving, told him what he was getting himself into, and gave him a chance to bail before we went any further. He declined obviously, lol.

I'm glad that my story could be of some use to you and your family, so thank you for sharing. Like I said, if I had it to do over, I wouldn't have had it any other way! If your daughter doesn't want to leave you- and it's truly how she feels, personally I think you should let her do what she wants. Right now for y'all, it's not even about regret, but it could be if you sent her away and god forbid something bad happened to you and she wasn't there- she'd be devastated and guilt ridden for god knows how long.

 

[MyDaughterCheers]

@xtremeteal4life Thank you for your confirmation of what I think I already knew. Lung cancer is the same - there is no "if", it is always "when". I lost my dad to lung cancer last year, and he lived with me. All of my siblings have regrets for having moved away and not spending the time I did with him. I am so grateful for that time, and I think my daughter will be much the same as me. We have been brutally honest with our kids because, like you, I want details and have a need for the truth.

Since I am on the subject, I want to take a second to make an unsolicited public service announcement. If you have lungs, you can get lung cancer.

My dad and I were both never smokers. We have a genetic mutation that caused our cancers. If you ever have the symptoms of lung cancer, please see your doctor.

Blood when you cough or spit
Recurring respiratory infections
Enduring cough that is new or different
Ache or pain in shoulder, back or chest
Trouble breathing
Hoarseness or wheezing
Exhaustion, weakness or loss of appetite

 

[MyDaughterCheers]

@LegacyQueensAmanda I'm sorry to have hijacked your thread. You, your dad, and your family are in my prayers.