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Hashtags #rarecancer for Instagram


When your body fails you.

When the person and beautiful life you once were become a nostalgic IDEA outside of your illness {swipe to see}. WHEN ALL HOPE IS LOST.

When there’s NO medicine in existence left to save you.



Countless hospital visits.
Waiting rooms.
Poking. Prodding. Pain. Tears.
Too many medications to count.


More waiting rooms & waiting hearts.
PLEASE God. PLEASE Doctor. PLEASE give us some good news this time.

CT scans. MRIs. Xrays. PET scans.
Stem cell transplants.
Side effects.
Emergency rooms.
MORE tears.
MORE cancer.
MORE bad news.


Cancer took my Mom. I couldn’t stop it. Maybe cancer took away someone you love and you couldn’t stop that either. So how do we even ATTEMPT to carry on after we lose the one's we love? How do we HONOR the ones we've lost? How do we FIND MEANING in their loss? HOW DO WE MAKE A DIFFERENCE? GIVE BACK?

For me?

choose to RUN BOSTON 2020 for MY Mom.

I choose to RUN for YOUR loved ones who also know this fight.

I choose to run for YOU -- whether you’re in the battle yourself, or supporting someone else in their battle w/ #cancer.

But most important of all? I CHOOSE TO RUN FOR THOSE WHO CAN’T.

I run with @danafarber to FIND A CURE — but I want to be VERY clear about something.

I am NOT a special person for doing this.

I am NOT strong.

I am NOT a “HERO” or a “WARRIOR.” Why? Because 26.2 miles is NOTHING compared to the marathon my Mom went through. The marathon you or your loved ones are enduring/endured.



I couldn’t save my Mom, but maybe I can help save yours. Maybe WE can help save someone else who is suffering from this terrible disease by raising enough resources to ensure the right research for a CURE has the CHANCE to exist.

Please join me in my fight to raise money for a cure for ALL RARE CANCERS.

Lastly, please help me keep my Mom’s legacy & memory ALIVE.

If your heart feels drawn to my cause or if you want to read more, please find my DONATION LINK IN MY BIO ⬆️ Thank you for your support ❤️


Last year even tho my chemo drugs could all cause hair loss I never did lose my hair. My hair thinned out and became really damaged. So I took charge and shaved my head. It turned out I love the buzz cut look on me!
This time same deal. Three chemos that all can cause hair loss. They say it normally takes 2-3 rounds before it starts falling out. I start round 2 this Tuesday.
This morning my scalp was really tender and it took me a minute to realize why.
I actually don’t mind. Hair loss doesn’t bother me. Maybe because I already shaved it last year and loved the look. But to me it’s just hair so I don’t really care. I’m just hoping it goes fast so I don’t have all these bald spots showing. Then again i did run errands today like this. 🤷‍♀️ .
#cancer #rhabdomyosarcoma #rarecancer #chemo #hairloss #chemohairloss #baldhead #baldisbeautiful #pediatriccancer #cancersucks #lifewithcancer #lifeonchemo #cancerblogger #blogger #stupidcancer


🎗 Very exciting UPDATE: Thanks to your help from the past two months, we’ve been able to lay the groundwork for our first donation, which will happen on December 31, 2019. We’re delighted to announce that the recipient of our first donation will be the @liposarcomagenomeproj
The research that is coming out the SIMCHES research lab at @massgeneral is extremely promising. Not only is this research significant for liposarcoma, but encouraging for all sarcoma types, which are not a priority by large research institutions and pharmaceutical companies.

The team is comprised of some of the most talented minds in epigenetics and funding goes directly to the researchers. The ultimate goal is to develop new therapeutic options for a hard-to-treat, often chemotherapy-resistant cancer.

Thanks again for all your support. If you have an excellent foundation/institution that you'd like us to consider in 2020 or would like to partner with us, please reach out to info@curestitch.com 🎗


Yesterday we celebrated Cameron! A long and very fun day at Dave and Busters!! The waitress bought Cameron a huge dessert! Then a ton of games and cool prizes! 💙


the trick is that as long as you know who you are and what makes you happy it doesn’t matter how others see you. you’re still going to get criticized, so you might as well do whatever the f*ck makes you happy💫

{excuse my awkward mirror selfies}


It seems weird it’s been almost 2 weeks since my trip to the Mayo Clinic in MN. It was very interesting. I found everyone to be incredibly nice and friendly. The Clinic itself runs like a well oiled machine. I was very impressed with my dr./oncologist. He spent over and hour with me. He knew my entire case forwards and backwards. He asked questions and listened as I went into a lot of detail. I even apologized if I was long winded. He said don’t apologize I want the information and you weren’t off topic at all. I was floored at how nice and detailed the entire staff was. The facility was huge. They have this underground subway for people to walk between hotels and buildings. But it’s not dark tunnels. It’s huge walkways with shopping, food, information desks. You don’t feel unsafe. I got around very easily and I was by myself.
As I’ve stated before I have Rhabdomyosarcoma. It turns out the gene mutations I have make me one of the only people on record to have this version of my cancer. We always said I’m one of a kind but not so sure I want my cancer to be one of a kind. It doesn’t respond to traditional treatment protocol so we have to think out of the box to find the right combination of chemos to start shrinking this damn tumor. It’s basically like trying to hit a bullseye with a dart standing 500 yards away. But I know I have the smartest oncologist in the world on my case trying to figure this out. So I have hope we can beat this damn thing.
#rhabdomyosarcoma #cancer #cancersucks #rarecancer #raredisease #pediatriccancer #blogger #mycancerstory #stupidcancer


I will be running the Big Sur International Marathon 2020 in memory of my father who passed away from brain cancer at the young age of 48. ▫️
I am excited to share that I found a charity that I am partnering with on my run. The Allyson Whitney Foundation ( @allyson4rare )shines a light on the underserved demographic of young adults with rare cancers, such as brain cancer. I have set a fundraising goal of $1200, but will do everything I can to break that goal.
to read my full story or to make a donation clink the link in my bio.
Thank you for you time and consideration. And if you swipe left you will see a very cute picture of me and my dad ❤️
#AWFSquad #Allyson4Rare #BigSur2020 #BigSur #marathon #charity #cancersucks #braincancer #rarecancer #runningforacause #mywhyismydad #mywhyismyfamily


🤪Hysteria and Happy Endings🤗.
Well Thursday Scan Day was certainly character Building! From now on I need to remember if I want to be at a 9am appointment in Chelsea leave at least 7 hours to get there 🤦🏼‍♀️ I don’t know what universal force was in play that morning but it certainly played mind games with me. Everything was put in our path of getting there on time and it didn’t take long for me to become absolutely hysterical, Poor Sam @sampower76 did a grand job of talking me down and thankfully the Marsden imaging department really didn’t mind me being an hour late and totally ignored me waffling apologies like a school kid late for class, so sorry sir, wasn’t my fault sir, the dog ate my homework, ....🤦🏼‍♀️.
My fabulous anna @a_wydro had come to meet us for the day and can I just say that girl can keep a secret, don’t ever play poker with her because the ace she was keeping up her sleave was my little sugarplum mariana @marianafcoutinho who I thought had flown home to Portugal the day before. Marianna has EHE too and I always feel guilty for moaning about traveling to London as she flies over every 3 months to see the same Dr Thumbs Up as Both Anna’s other half Artur and myself. Marianna has been over in this country having an amazing procedure called IRE on her liver, tiny needles inserted at points around the tumor that give off ‘superpowers’ to hopefully destroy the tumor.
So after lots of hugs,kisses, pasta and coffee we set back off to the hospital for my afternoon appointment *Apologies to anyone in the outpatients waiting room for our screams of laughter and loudness* . Long story short no more chemo for me till after Christmas and early indications of the scan are looking positive so I have been sent home to chill, enjoy Santa time and smile when I remember a wonderful day with wonderful new friends for life ❤️.
#rarecancer #ehesarcoma #sarcoma #royalmarsden #friendsforlife #chemotherapy #chemosucks #happychristmas


Today is the first day I've felt human in a long while! Eating is getting easier (would be even better if this damn sore on the roof of my mouth would go away) and I haven't lost weight for the first time in like a month. Cut my fentanyl dose in half and only taking oxy at night now. Skin is dry but healed around my neck.
PLEASE be the beginning of the end of this horrible time in my life!!! I'm ready to move forward in finding my new self in all of this.

#fuckcancer #cancersucks #cancerawareness #cancerwarrior #tonguecancer #oralcancer #headandneckcancer #youngadultcancer #ayacancer #aya #rarecancer #survivor #radiation #radiationtherapy


NET Cancer Thriver, Jennifer Zuniga, discusses the importance of safe places for neuroendocrine cancer patients to discuss their experiences. ⠀

Support groups and conferences can offer great opportunities to connect with other NET Thrivers! Visit our website for more information about how you can get connected to the NET community.


OHSU Doernbecher’s is simply the best! Cameron got to ring the gong and the staff sang him the no more chemo song!

Can’t stop replaying this! 💙 Thank you everyone for all the love and support this past year!


Cancer Center Grand Rounds this week was a CPC with a "known" diagnosis. Unlike the typical "unknown" diagnosis presentation, the discussants were aware of the diagnosis and involved in the patient's care.⁣

"A 34-Year-Old Woman with Cholangiocarcinoma."⁣

The woman presented with back pain and abdominal pain. Imaging was suspicious for malignancy and pathology showed intrahepatic cholangiocarcinoma and FGFR mutation. ⁣

Dr. Lipika Goyal discussed the diagnostic and management decisions that were made. She received surgery, interventional radiology, chemotherapy,  targeted therapy, and immunotherapy. ⁣

The landscape of cholangiocarcinoma is rapidly changing. Innovative research is and new therapies are on the horizon for this rare cancer. ⁣

Read the Case Records of the MGH - the CPCs - in the weekly NEJM. Link in our bio!⁣

Discussants: Lipika Goyal, Theodore Pierce, Vikram Deshpande⁣
Case: Christopher Chen⁣
Editor: Eric Rosenberg⁣
Associate Editor: Dennis Sgroi⁣
Editorial Fellow: Kathy May Tran⁣
Production Editors: Emily McDonald, Tara Corpuz



Today we went up to Doernbecher’s super early to get his final scans. He ended up not needing to be sedated for his MRI since he was able to stay very still. He watched Kung Fu Panda and Mommy got to sit right next to him. X-Rays were up next and super quick and easy!

We had an appointment up in the clinic to go over the scans. We got to see Conrady and give him his present. Cameron got to sign his lab coat. Something we have been looking forward to do all year long! We gave Dr Stork her cup too! They both loved them!

Dr Stork said his scans were better than she expected!! There is no evidence of the LCH! Words we have been waiting to hear for what feels like forever! Mom & Dad couldn’t be any more happy!
We had so many family members there to celebrate with us today! The staff sang the no more chemo song and Cameron got to ring the gong!

We ended with Momo (Molly Hester) dressed up as a cat, per Cameron’s request and they had one final race down the hall (something they do after each appointment). Lastly, we all crammed in the elevator for one big huge elevator selfie!

We have to still follow up every three months, but we are so happy to be done!! Thank you all for all the love and support over this past year! It means the world to to our family! 💙


A HUGE thank you to everyone who supported The Childhood Cancer Project this week during our Art Miami Party and during #GivingTuesday . You’re awesome! Together, we are developing cures and delivering hope.
#GivingTuesday #curechildhoodcancer #morescience #morethan4 #supporrchildhoodcancerresearch #pediatriccancer #cancerpediatrico #rarecancer


Support OcuMel UK by texting ‘OMUK’ with the donation amount to 70085.⁣

#rarecancer ⁣⁣⁣⁣
#smallcharity ⁣⁣⁣⁣
#1in17 ⁣⁣⁣⁣
#charity ⁣⁣⁣⁣


Stephanie Mullins credits her faith and the #chemotherapy she received for getting her through a rare, advanced #gynecologiccancer. ⁠

Read her story, How Faith, Family, and Friends Are Getting Me Through Peritoneal Cancer, on #CONQUERthepatientvoice. Link in our bio. ⁠

Do you have a #cancerstory that you'd like to share to our community? Let us amplify your #patientvoice! Visit www.conquer-magazine.com/submit-an-article for information on how to submit to #CONQUER. ⁠
#patientstories #cancer #cancerpatient #patientwithcancer #cancersurvivor #beatcancer #cancerfighter #lifewithcancer #livingwithcancer #copingwithcancer #GYN #GYNcancer #rarecancer #PeritonealCancer


https://atriumhealth.org/dailydose/2019/11/20/first-in-world-procedure-for-liver-cancer-restores-hope-for-patients?utm_source=facebook&utm_campaign=organic_social read it someone you know is going through something and needs help I’m blessed to be here 😍😇#atriumhealth #rarecancer #fightlikeagirl #blessed🙏 #fight


🎗 It's #GivingTuesday and we're excited to get the word out about the insanely promising research that is coming out the SIMCHES research lab at @massgeneral for the @liposarcomagenomeproj 🔬 Not only is this research significant for liposarcoma, but encouraging for all #sarcoma types. Recent progress includes classifying the molecular profiles of and performing genomic microRNA analysis on both well-differentiated and dedifferentiated forms. The ultimate goal is to develop new therapeutic options for a hard-to-treat, often chemotherapy-resistant cancer. Please visit @liposarcomagenomeproj and consider donating to their campaign — all proceeds go directly to the scientists! 🎗

#liposarcoma #cancerresearch #donate #fundraiser #liposarcomaawareness


Transformation Tuesday! The left pic is hard for me to even look at. 😮
👈 is Thanksgiving a few years back, 👉 is last month.
Carb face ➡️ keto face.
#jen.and.keto #keto #ketogenic #ketosis #ketowoe #ketones #ketoon #ketolife #weightloss #accwarrior #rarecancer #rarecancerwarrior #adenoidcysticcarcinoma #transformation #oregonketo


Last day of vacation. We have had a wonderful time in Scottsdale, Az. Stayed at the @camelbackinn. This is my favorite property to stay at. There is something so relaxing here. And after the year or so that my family and I have had this was perfect. I don’t want to go home but it’s time to head back and face this cancer with everything that I have. As always my stay was perfect and I hope to be back soon. .
#vacation #marriott #jwmarriott #camelbackinn #titaniumelite #cancer #stupidcancer #rarecancer #rhabdomyosarcoma


Ocular melanoma is most commonly diagnosed in people aged around 55.⁣

[Source: http://ow.ly/K46A50xhOh3]⁣

#rarecancer ⁣⁣⁣⁣
#smallcharity ⁣⁣⁣⁣
#1in17 ⁣⁣⁣⁣
#charity ⁣⁣⁣⁣


Every dollar matters! You’re helping a patient with a rare cancer pay for meds, travel expenses, hotel, clinical trials, etc. Help us continue our mission and donate today! Rare cancers need more recognition and more awareness!! Be a part of a great cause! Any items you purchase from us also benefit these amazing patients. We sell hats, shirts and bracelets! #rarecancer #jbirdsjourney #jbirdstrong #givingtuesday #donate #helpothers #greatcause ♥️🙏🏼


We’re back and strong! Please consider donating/re-donating to rare cancer research in the link in my bio! Any amount helps! Or better yet dm me to join our team! (You don’t need to cycle for long!) This cause has impacted my family so much this year, any help would mean the world to all of us!


Urgh! Mind Monkeys, those pesky little cutesies that burrow away bringing all sorts of doubts and insecurities. Mine have been working overtime since the chemo pause button was pressed. It’s been a busy couple of weeks with appointments, blood transfusions, echocardiograms blah de blah de blah.... and this week it’s London bound for scans and a check in with the Marsden team all while I’m ‘supposed’ to be relaxing and de-stressing. So physically I’ve been resting but the head hasn’t, All because of those bloody mind monkeys!! That is until yesterday when social medial memories reminded me of a London visit 12 months ago. Then the memories flooded in, how physically limited I was then, how scared I was at the scan results I received, what was to come. Fast forward 12 months and yes I’ve had a little blip and pause but compared to then I’m physically doing pretty good and pain is nowhere near what it was 😃. So from now on whenever I get those feelings of anxiety again I need to remember Mind Monkeys might live in the head but they don’t need to take a place in our hearts, that’s where the good memories live and I’ll certainly be listening to my heart a bit more often from now on ❤️.
Namaste 🙏🏻.
#mindmonkeys #memories #anxiety #mindfulness #meditation #rarecancer #ehesarcoma #sarcoma #cancerawareness #cancersucks #royalmarsden .


❗ ❗ The OcuMel UK Team Needs Your Help ❗ ❗⁣

Thank you to all our lovely members who have already liked us on Facebook and have followed our journey, however, we are still under 2,000 likes… help us grow and raise awareness of ocular melanoma by inviting your friends to our page 👊⁣

#rarecancer ⁣⁣⁣
#smallcharity ⁣⁣⁣
#1in17 ⁣⁣⁣
#charity ⁣⁣⁣


Friends, I need to get this off my chest because the shame I have kept mostly to myself for 3 years is literally killing me... The pain that I carried in my leg for 15 years of my life was diagnosed as Synovial Sarcoma - a rare soft tissue cancer that affects 1 in 3 million people each year in the US. The community I was living in up to this point - people got better, not sicker, and it became so hard for me to simply exist because everyone I knew was out living while I was crippled in fear of my future.

There are two parts to my life now: before cancer and after diagnosis, and I’ve had a hard time letting go of my old life but nothing grows from hanging on and neither have I. I struggled through the first 15 months of my diagnosis alone and isolated myself with the fear of what could happen. What did happen. What is happening.

Here we are today and the cancer detected in my lungs a year ago is trying to take over. The hardest thing I have ever had to do was learn to live with my disease, and I’ve been failing. I can’t go on like this anymore. While I will die with this disease (whether active or dormant), I need to remember that I’m still here and I’m allowed to live like I used to. The secret is out. This is what happened and this is what’s happening.

I will not survive doing this on my own again. To my favorites who have stuck around the last three years and the amazing humans I have been able to share my life with since, thank you and I love you. It truly takes an army and I’m so blessed to have you here be my side, so here’s to making this shitty time some of the best times, because time is all we’ve got and living is all we can do!
#fuckcancer #screwsarcoma #sarcoma #sarcomaawareness #strongerthansarcoma #notallcancersarepink #rarecancer #livingwithcancer #igotthis #synovialsarcoma #livetoday