June Sweat- Remembering Jewell
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- Опубликовано: 22 ноя 2022
- Jewell Sweat passed away from gastric cancer at the end of 2020, just 10 months after learning she had advanced cancer. Her mother June recounts the challenges she faced as a pediatric patient with a rare diagnosis.
Early Stomach Concerns & Difficulties
My daughter Jewell started having stomach problems in February of 2020. She was a super athletic girl: she participated in three cheer teams and was always on-the-go. When she began having discomfort, we chalked it up to stress and a poor diet.
However, her problems worsened. The day before she entered the ER, she was coaching a cheer team and shopping for her prom dress. The next thing we knew, she was in the hospital with severe stomach problems.
Looking for Answers
From the get-go, there were many well-meaning providers and caregivers who wanted to help - but we were struggling to find answers. Gastric cancer is rare as-is, but it’s exceedingly rare in children. Pediatric and adult specialists evaluated, tested, and scanned her thoroughly, but it took some time to get her gastric cancer diagnosis. Meanwhile, she celebrated her 17th birthday in the hospital in March.
Once the doctors determined that she had gastric cancer, they scrambled to find answers for her treatment. They weren’t sure what type of chemo would be best for her or which surgeries would be necessary given her age and condition.
An Attempted Gastrectomy After Jewell's Gastric Cancer Diagnosis
Initially, Jewell had FLOT treatments, which did help. They got her to a point where scans showed she was NED - No Evidence of Disease- this was fantastic news. The next step involved going to NIH in Maryland for her total gastrectomy.
We traveled, prepared for surgery, and did all that we could to prep ourselves for her needs following the procedure. However, after the surgeon began, they found more cancer. Essentially, her NED was inaccurate - they were not able to proceed with the total gastrectomy.
Exploring Other Gastric Cancer Treatment Options
At this point, we turned our attention to other options for treatment. Unfortunately, we hit roadblocks because of Jewell’s age. So many well-meaning providers wanted to help her, but their hands were tied since she was technically underage for participating in clinical trials and other experimental treatments. Even big-name hospitals and top-tier doctors were limited in what they could offer.
Meanwhile, Jewell was getting worse. She was doing palliative chemotherapy and we had hospice help for a few months. She passed away in December 2020 after courageously battling gastric cancer for nearly a year.
A Need for Change
I watched her fight so hard as a teenager - this entire experience highlighted the extreme need for change surrounding pediatric cancer. It was hard if not impossible to get into clinical trials and to get specialized care because of all the red tape. There are many amazing oncologists out there, but it’s devastating when they can’t properly treat your child because of flaws in the system. Rare cancers call for exceptions and major changes so that patients can get proper treatment.
Advice & Hope for the Future
Of course, I miss Jewell every day and wish she was with us. I’ve learned through this experience that you can’t just take what doctors say at face value whether you’re 70 or 17. Patients need to listen to their bodies and push hard for adequate testing and scans. Gastric cancer patients should always advocate for themselves at each step of the way as well.
My main hope is that we get awareness specifically for pediatrics. So when someone is thrown into this situation, they aren't torn between being a caregiver and having to research treatment options. I hope that there is easier access because I spent so much time researching and didn't sleep much.
I watched Jewell fight gastric cancer for so long and so hard. These kids are more resilient than what you can possibly believe.
NO ONE should be denied cancer treatment and clinical trials because they have not reached the age of maturity. Our healthcare system is so messed up. My heart breaks so much, stay strong momma! ❤
Right! It’s called equity and I’m a white women who went from 1A to stage 3A after delayed surgery by 5 months.
Clinical trials can’t have such a weak patient and most need surgical removal and 1 line of chemo
among the MANY great things President Donald J. Trump accomplished while in office (which the MSM will NEVER tell the public about) is the "Right to Try" legislation, in which roadblocks and "red tape" are removed so that critically sick patients are allowed to "TRY" new and innovative treatments that may not yet have full legal approval. With nothing to lose, why not give patients the option to "TRY" every possible remedy, as long as they accept the risks?
@@marilyntonelli8832 I’d prefer you not call my extremely strong child “a weak patient” unless you were somehow involved in her healthcare that I’m unaware of. Thank you ma’am.
@@Quintessence. thank you, DR, from the stolen state of PA.
I am flabbergasted at a stomach cancer diagnosis in a teenager. Deepest, heartfelt condolences to you and your family.
I'm flabbergasted that there are 400 others like her every year in the U.S. 😰 I thought children and teenagers only got leukemia and bone cancer. I'm so sorry they didn't catch this teenager's cancer in time.
Thank you💖
Oh June, your daughter was so beautiful. To lose a child is so hard, especially a young child. My deepest condolences to you and your family.
Oh my God i'm so VERY sorry for the loss of your Amazing,Beautiful daughter🙏🙏🙏😥
This is wrong in so many ways. What a beautiful young soul. My heart breaks for all.
I remember when you posted Jewel's story on the Hope for Stomach Cancer group. My son 21 was diagnosed the August before her. I couldn't believe how young your daughter was. I'm very sorry that you and Jewel had to go through this. She is now a beautiful angel proudly watching you bring awareness to so many about this awful disease.
I am so very sorry for your loss.. thank you for advocating for these young patients to get the care they need! I did not know they couldn't receive the same treatment.. praying that change happens soon!!
Sadly our country spends the most on healthcare of any country and we have some of the worst outcomes. The money isn't going into delivery of care but administrative costs. We need to do so much better for patients. I am so sorry for your loss. I can't believe you were able to tell the story in a calm manner. I wish you and your family some type of comfort and healing.
These Dr never ceases to amaze me how they over look so many cases and chop it up to be nothing. They need to be held responsible for miss diagnosing the patient and not taking then serious.
To be fair, I don’t blame the drs over looking this. It’s pretty much unheard of and she was very healthy in every aspect until she wasn’t.
oh such a similiar story xx my darling youngest son was 22 when he was diagnosed and eight and a half months later, still 22..he died in so much fear and pain..his death defines me..do contact me if you would love to xxx I live in Marrakech, I left Australia after Ed died and have a ooking school in celebration of my divine boy..he was a celebrated chef.. x
Im sorry for you loss💗
You and your other family members should be checked for H. Pylori infection. This bacterium is the cause of most stomach cancers, and it tends to spread in households. I am very sorry for your loss of your son.
Absolutely Diabolical!! This is America!! Rest In Peace Beautiful Girl 🕯
It may have been more diabolical to be used in trials.
@@ezmadarlington942so many of the trials are miraculous. All the treatments we have now were once trials….
Fly HIGH Forever Now in Eternal Life, Most Lovely JEWEL...
Your hope is spreading awareness. So many lives have been touched and informed bc of the work the whole team is doing. TY
I'm a former Marine and ii thought I was tough as nails, untill stage 4 tonsil cancer hit me. I promised the medical team that I'll put up the best fight I could. My cancer was rid from my boy heat and soul. Sorry for your horrible battle you and your daughter had to fight praying works, for me it did. Love Neal
So devastating that there was no health system, plan in place for Jewell. I hope the changes are planned for now and made soon for all those who don’t fit the mold of illness. I am so sorry for the loss of this beautiful girl who was so amazing!❤ She will always be with you. Sending you blessings and love!💕🙏🏻
She was so amazing and I know she is absolutely thrilled with the strength, courage and compassion you are showing. You are making a change. You are making a difference. God bless you!
So very sorry for the loss of your beloved daughter Jewell. Thank you for sharing and speaking out and advocating for these young patients. Bless you.
May her Soul Rest In Peace
Condolences to all the Family 😊
Just makes me weep. It’s not fair.
R.I.P. sweetheart 😪🙏my deepest condolences to her family
I am so very sorry to Jewell’s Loving Mama, and her Family/Friends😢 Our children should not be having these types of cancers. So young and beautiful, Precious Jewell❤
It would be a blessing, if no one had to go through it.
As someone else said, there are really no words. I am so very sorry for your loss, and I am sorry for the lack in our health system regarding cancer in children…and cancer in general. It really sucks. You are in my prayers.
Praying for the Sweat family. I'm so terribly sorry for all you've gone through. Children should not get cancer. I wonder if we will ever find out how this happens.
As a mom myself, I can't even imagine the loss of a child. It's hard to believe a child can get cancer when they haven't even been on this earth for that long. I'm struggling to understand God's plan & praying for awareness & research for pediatric stomach cancer. I am so deeply sorry for your loss. Sending loving energy your way.
There IS no God, otherwise cancer wouldn't exist. THINK. 🙄
God has a plan for this beautiful woman.
@@Toffee146 Profoundly ignorant statement. You have a lot to learn.
Thank you. I struggle with that.
@@pattys7429 🙄
I am so sorry for your loss.
I am sorry for your loss. I hope the cure for cancer is revealed soon!
Heartbreaking x
I'm so sorry for the loss of your sweet daughter to such a devastating cancer.
My husband died from 4 different cancers 2 years ago.
My heart aches for you, dear friend.
God bless you.
Please accept my sincere condolences for your loss.
Your daughter was so beautiful!
My heart hurts for you and everyone going through this. My hope is that things change by sharing stories like yours. It’s so incredibly sad that our medicine system has so many policies or regulations that make it sometimes impossible to get the correct treatment or get diagnosed on a timely manner. 😢
Our youngest sibling Michael Joseph Pavic, beloved son/brother/nephew/Uncle/friend, died after. A 4 month battle with aggressive gastric smell cell neuroendocrine cancer. He will be 41 years young forever. There's so much more research, treatment options that NEEDS TO BE done. He was given an 11 month life expectancy. Sorry for your loss. There has to be better care, cures for gastric Cancers overall, including gastric adenocarcinoma
I’m so sorry for your loss💗
So the system skilled her... My deepest condolences. Rest in peace your lady
My heart breaks for you Mama 🙏❤️🙏❤️...
🙏 Deepest condolences to the families & friends of Jewell ... May Jewell be blessed to a better world & realm ... & be reunited with her loved ones in due time & place ... 🙏🕯🌼🌿🌍🕊
NO words....my heart breaks for you..cant even imagine your pain... rip sweet girl... god has you..... love you mama june!
I’m so devastated for the loss of your beautiful baby x
I am so so so very sorry for your loss.I will think of Jewell, she was beautiful and so brave.Sending love...
I would’ve thought NIH would’ve had something. I’m so sorry for your loss. Thank you for sharing this story. ❤️
We worked closely with the NIH & they did everything they absolutely could💗
@@junedingler I definitely don’t doubt that. And they are a wonderful facility. I just thought they took pediatrics for studies when they had cancer. But the problem is, since they do drug trials, they have very strict protocols, and many times it’s difficult to meet the criteria.
I am so sorry for you loss. My condolences to you and your family. May God give you the strength to carry on. Losing a child is very painful. My daughter passed away at the age 33 and she would be now 37 years old . It is hard to cope but I look up to God, to get me through the hard times. I lost my husband in 2021 he passed away of Covid. ❤❤❤❤❤❤
I’m so sorry for your loss. 💔
Thank you for telling your story. Bless you.
Sending my condolences 🙏
i am sorry for your loss.
So sorry for all of this. She will never be forgotten.
❤ xxx my heart goes out to you !
I'm sorry about your loss. Such a beautiful girl!!
She was a beautiful girl! God bless
Truly heartbreaking. God bless this beautiful family xxx ❤
Gods peace and strength be with you 🫶🏽🙏🏽🫶🏽
I'm so deeply sorry
So sorry 😢
oh my- she was beautiful. so sorry for your loss.
I am so so sorry 😞
I,m so so sorry you lost your precious girl ! Life can be a cruel ! I'm from the UK our National Health is suffering badly since covid ! May you find peace , my very best wishes! Sue . 💝💝💔
I am so sorry for your loss, your beautiful young daughter was way to young to die from cancer but unfortunately cancer doesn’t respect age, even babies get this dreadful disease. Maybe one of these days they will actually find a true cure for cancer, I lost my mother to cancer when I was 35 and also my grandmother and my grandfather to cancer. I pray that God will give you peace in your heart and comfort you. 🙏🏻
So sad to see people are dying about their can’t get access to medication
Sorry for your loss ❤❤
My Warmest thoughts, prayers and Love to you ❤❤ Rest in peace beautiful Jewell. I pray there must be a great change in treatments and how children can go on trial treatments too!!
This far too devastating, words are not enough to express what I feel when watching this. I wish your message will reach awareness and hope for action in research.
Love your way 🙏❤️🙏 🦋
Oh, Sorry about Jewell's passed away, stay strong and Good/ sad video
This is beyond tragic.
Rip beautiful girl 🕊️ you are free from pain on your earthly body . Fly high in paradise with the angels 💜 my condolences 💐 to her family especially her momma 🥺😔
What a shame, I’m so so sorry. May she RIP! 🙏🙏❤️💔❤️
RIP Jewell 🙏🏻
We agree with you the trials for children are not there and we saw so many kids in the hospitals our son was 7 yrs old when diagnosed with cancer (osteosarcoma) and the protocol hasn’t changed since the 50’s it’s insane the chemo was hardcore most people get to go home when they get chemo we had to stay in the hospital 5 days every month 😭😭💔 and our Emgee handled chemo better then most of the kids but it did not kill the cancer it kept coming back 💔💔💔💔😭😭
I’m so sorry y’all
Went through all that. It’s heartbreaking
When she said that kids were not able to get the things that the adults are. That broke my heart. Kids should take priority and even if they don't fit neatly into a research box they should be given a chance. She was 16 two short years away from being an adult. This was not right.
So very sad and way too young. I don't understand how it was showing no evidence of cancer but then when they were doing surgery it was there and too late. I'm so very sorry, she was beautiful. 🙏 🙏
It's diffuse stomach cancer, so it rarely shows up in scans for young adults as well. It is a huge problem in our community, and sometimes even that excludes patients from clinical trials.
This cancer hides very well and it’s pretty common the show NED in a scam and that be totaled wrong once they get in there, unfortunately
@@junedingler So how can it best be found when it hides?
In October 22,2014 I had surgery for my second feeding tube in 10 months because I have gastroparesis meaning my stomach and intestines are paralyzed due to diabetic neuropathy. During surgery my team of doctors were taking 85% of my stomach and some of my intestines out they found a tumor called gastrointestinal stromal tumor also called GIST. We had no idea I even had cancer. Plus it's a rare form of cancer for women. It's mostly found in white màles in their 50's and 60's and I'm a female and only 42 years old. I only needed surgery to remain cancer free thank goodness. I wish childhood cancers research was 100% funded by our government because 4% in really sad. I'm sorry for those who have passed on or who are fighting cancer now. Peace and love sent❤️🙏❤️🙏❤️🙏❤️🙏❤️🙏❤️🙏❤️🙏❤️🙏❤️🙏❤️
So happy you had good result💖💖💖 Hopefully one day there will be more for pediatrics!
🙏🏼🙏🏼🙏🏼🙏🏼❤️
❤
I am so sorry about your tremendous loss. That’s so ridiculous to be denied experimental treatment. If someone’s prognosis is dire, then why are they denied treatment. It could have been a changer but because of the denial of this beautiful young lady her family will never know if it could of worked
♥️🙏
I’m so sorry for your loss. Did you try Saint Jude’s Children’s hospital? I know they won’t take everybody.
😢❤❤❤
This is so sad
I am so sorry for your loss. 🙏❤️Her only symptom was stomach problems? How long was she feeling off? I am only asking because I am dealing with something. It's not my intention to be rude. She was so beautiful and I am in awe of your strength
I don’t really know what to say except she sounds like an amazing Daughter. You spoke straight from your heart. It will help to make the changes needed to fight these awful diseases. God Bless you and your family.
Nothing is bad as losing your own child.
Infuriating. 16? What is wrong with our healthcare system. How horribly helpless it must feel watching this happen to your child. I’m so sorry, momma. So, so sorry.
So much need for change!!!!!
Something's not right with the world when we've got teenagers dying from cancer. Terrible. IMO, Jewell and other young people should go to the TOP of the list of the trials as they have more life to live. So sorry for Mama, I hope you are doing ok.
Omg I don't understand why 1.it took awhile to figure it out and 2. 18 your considered a adult so 16 isn't that much younger.they should of been able to get her in a trail theirs so many. This is the saddest I've ever heard. So was the cancer originated in the stomach? How heart ❤️ wrenching for a parent to be told we opened her up but it was too advanced. What a beautiful young lady. She's all who loved her there Angel now. Prayers and hugs full of love ❤️ for her family. I can't imagine there pain.so sad 😢
@Sherry Dawson, no there aren’t that many trials. 🥲
Should've = should + have. Not 'should of'.
....SHOULD'VE been able to get her in a TRIAL. There ARE so many. (Plural)
..... YOU'RE considered AN adult... (you + are)
Can't imagine THEIR pain.
THEIR angel, now....
Basic English. Come on. 🙄
@@Toffee146 really a grammatical lesson? Shame on you.
@@Toffee146 seriously? That's how u spend your time verses responding to the story? Pathetic but if that's the only way u can get attention. Then I feel sorry for u.
Why are you talking about grammar in a thread about my dead child, ma’am?
Oh, noooo, this is just too much. Her family must be so devastated, I doubt as a mom I’d ever recover. Knowing she was so sick and I couldn’t help her. 😢. Evil cancer, just evil.
May I ask what her symptoms were when she wasn't feeling well? I'm so sorry..my teen is having stomach issues. Pain after eating and feeling full after small meals. Loosing weight . Tired..ty for your reply
I thought that only in Russia people are forced to fight medicine for the lives of their relatives. It is not normal that people do not receive help from the state, but are forced to fight to get this help. I'm surprised that in America it's the same as in Russia. .We have a different level of development, a different standard of living. I have always considered medicine in America to be more advanced and accessible and innovative. It turns out that in America, too, medical care is not available. Very sad.
Я думала, что только в России люди вынуждены вести борьбу с медициной за жизнь своих родственников. Это ненормально, что люди не получают помощь от государства, а вынуждены бороться, чтобы получить эту помощь. Я удивлена, что в Америке тоже самое ,что и в России. У нас разный уровень развития, разный уровень жизни. Я всегда считала медицину в Америке более продвинутой и доступной и инновационной. Оказывается, что в Америке тоже медицинская помощь недоступна. Очень печально
St Jude’s wasn’t doing any clinical trials for pediatric gastric cancer? I’m so sorry for your loss.
How can I help.
What does age have to do with Cancer, it’s a monster!!!! So sorry for your loss 😢
Never a problem finding money to fight wars..
What kind of symptoms did she have??
Why is age kept as a factor for getting treatment?
Trials have strict parameters to determine if they can go further and become a standard of care treatment. Her age
Excluded her. Many other reasons exclude people from different trials all the time. It sucked Ams many specialists couldn’t actually be her Dr because she was a pediatric pay although many did consult on how to treat
Should of never been denied... How stupid ... Time to change the rules... My heart goes out to you... Sorry for your great loss... God Bless
😢 So Sorry for your loss. What we put in our body’s matter, Our Food is so highly processed it’s not fit for human consumption! It’s full of sugar& Carcinogenic ingredients.
How can scans show NED yet, in actuality, the disease is terminal?!
I just can't believe because of her age they couldn't do more for her just because of laws. I thought being so young they would do everything that they come first. What about that st judes I wonder if they are restricted to not do treatments for them cause they are so young.
She didn’t qualify for St. Jude
I literally tried everything.
@@junedingler On their TV commercial they say no one is ever turned away. Just as I am texting this message there's a st Jude commercial on. Sorry she didn't wasn't able to get in.
It's always the athletic ones
They should have given her the trial treatment. So wrong. If the child and parent are in agreement to move forward, it should be done!
We did everything we could. It’s not as easy as everyone thinks.
@@junedingler Hugs to you, Mom. No one can understand the situation you and Jewel were in because they have not been there. I am sorry for everything you went through, and for your loss of your beautiful daughter. Sending you peace, hugs and so much love.
Messed up system for sure @- why wouldn’t all options be available for all people of all ages???
Did you consider St. Judes
Why cancer at so young age? Something is wrong in this world, we don't know about
Please contact Edwina golomback, I really have a feeling she would help you. Talking to someone in the same situation more or less, I think really helps. My heart is with you. I could not imagine ever having to lose my one and only son. I'm going to pray for you.
Thank you. Please let her know about Hope for stomach Cancer. We have some amazing support groups if she needs to talk to someone 💕
How sad. It is sick that children can get sexual transition surgery but not cancer treatment options. What a beautiful girl and I am so sorry for her family.
That’s not what we’re here for.. this is about my child
And stomach cancer. I don’t do the arguing thing using my child’s name when she has nothing to do with that.
I have a question.... was she a invetro baby?
There are approx. 400 under 18 patients diagnosed a year in the USA.
Odd question but no