I say this at the beginning and end of every school year: being able to physically attend school is a privilege not many have. Most children do not understand this until it’s taken away. Most kids wish for a school day to be cancelled or cut short, but those who are unable to attend, wish for the chance to attend. It is so isolating to the point you would never understand unless it happens to you. I used to photoshop myself into school photos to pretend like I was there. It helped me cope with not being there. I was always told “you’re so lucky you get to miss school”… and those words always filled me with anger because to me, they were the lucky ones. #gogreyinmay #mayisbraincancerawarenessmonth #braincancerawarenessmonth #thecurestartsnow #beatchildhoodcancer #gograyinmay #childhoodcancerresearch #givekidsachance #givekidsachanceact #diffuseintrinsicpontineglioma #rememberthechildren #childhoodcancer #kidscancer #pediatriccancerawareness #dipg #defeatDIPG #gogoldforchildhoodcancer #childhoodcancersucks #childhoodcancerawareness #gogold #childhoodcanceradvocate #kidsgetcancertoo #fightlikeakid #thisischildhoodcancer #morethan4 #pediatriccancer 🎗🎗 #NCI #nationalcancerinstitute #kidsareworthmore
Today was another 5K for the Glioblastoma Research Organization for research. To all Glioblastoma Warriors and Brain Cancer warriors currently fighting and those that have passed on, along with their courageous caregivers that take the journey right along with them, and those with Brain Tumors, this one’s for you!! In no particular….I send all my love to all of you🩶 Aubrey Lee McKee Teresa Ann Corman and John Laura Dill and both her parents and Father-in-Law Brooke Baldwin and Deanna Josh Blackmar and Chrissy Rupp (Her Dad also) Erica Castillo in loving memory of your father Kimberly Rary Sheets and Ransome Jim Corbett and Laura Benjamin Torbert and Torbert Trio Robyn McClelland and Brian Pamela Raines White and David Andrea Guidry and Hunter Shannon Dean Larson and Family Sondra Toups Hendon and Troy Liz Mauck Ribeiro and Paul Michael Shirley Donna Hamby Vaughn and Kerry Mason Janice Darla Dill Ramirez and Her Mom Ana and Eduardo Mike Susan Barrow If I forgot anyone I apologize to you…those listed are fighting, have passed on, or their caregivers🩶 Please y’all, feel free to say/comment their names so they may be remembered. Love to you all and your families🩶 #aubsmobstrong #glioblastoma #GoGrayInMay #GBM #braincancerawareness #braincancer #gogreyinmay #braintumor #justbeatit
Go Grey in May GBM 5K Your Way 🩶 I know Josh would've loved this (and he most definitely helped me play better to beat Mike) Also, pickleball may not be the best activity to track on a map 😂 We did not actually hit the ball completely outside of the courts, but I did go up to the clubhouse to get some water. Shout out to Strava for tracking our activity! 🧡 _____ 5/18/24 #braintumorawarenessmonth #braintumorawareness #braincancerawarenessmonth #braincancer #gogrey #gogreyinmay #greymay #gogray #gograyinmay #graymay #gbm #gbm5kyourway #glioblastoma #glioblastomaresearch #cancerresearch #braincancerresearch #glioblastomaresearchorganization #gbmro
Day 18: Finished the #RBCBrooklynHalf with NO pain in my knee! 🥹 It was HOT out there, SO grateful to my body and to everyone who was cheering me on! Thank YOU!! 🩶💪🏻🙌🏻🩶 #BrainTumorAwarenessMonth #BrainCancerSurvivor #ABTA #GoGrayInMay #YesIDid #Grateful #HappyTears
May is also Brain Tumor Awareness month , and even though our practice is dedicated to minimalistic motion preserving spine surgery, I get to do a fair amount of brain tumors when on call ! it is always a privilege to be of service in the setting of a tumor, causing severe pressure on the brain! This was a curative operation🙏🏼💯✔️ #gograyinmay #gograyinmayforbraintumors
GO GRAY IN MAY 🩶 May is brain tumour awareness month. I will be posting a photo of my boy along with a statistic everyday this month in an effort to raise awareness. Brain and spinal cord tumours are classified based on their grade. The grade of a tumour tells you how quickly it is growing and how likely it is to spread. Low-grade (benign) tumours grow slowly. They don’t usually grow into surrounding tissues or spread to other areas of the brain or spinal cord. Some low-grade tumours may develop into high-grade tumours. High-grade (malignant) tumours grow quickly. They can grow into nearby tissues and spread to other parts of the brain or spine. Malignant tumours that start in the brain and spinal cord rarely spread outside the CNS. More summer fun during covid! #gograyinmay #braintumorawarenessmonth
All Gray All Day 🩶 Day 17 🩶 5k Edition Guys! HE DID IT!!! We did it! We did the Go Grey This May 5k. We raised over $1,000 for @glioblastomaresearch. We walked, Nick and his coworkers ran, another couple we know tread-milled it, and yet another is using the amount of walking he does on the job-site today to count towards his miles. And that’s only including the people I’m aware of; not including friends of Chris and Sandra who are doing their own version of the 5k. Seeing this much support is amazing. Witnessing Chris grind down and search deep within himself in order to complete the last portion of the 3.1 miles… man! I told you guys he’s tough. I’m so proud. #TeamUnstoppable #gograyinmay #braincancerawareness #braincancerawarenessmonth #WeGotThis
Josef Marco B Malong 18th May 2005 - 11th January 2013 Happy Birthday Josef Josef Marco nicknamed JM was a happy, smiling, loving little boy. He loved to draw, play on the computer and play with Lego. JM loved to study and he was a bright student, he was also very talkative. He liked to play with his friends but most of all his brother. Sadly JM was diagnosed with dipg in 2012 and he fought hard. He was naturally stubborn and it was that plus his courage and tenacity that helped him to fight. Please keep his family in your thoughts and prayers, they miss him very much. You are a part of me, a part of me that will never leave. My memory will never erase you, not the pain of your absence nor the joy of your existence. You are within me, carried within my heart, you will be the undercurrent of my thoughts, the inspiration to my days. #Dipg #DefeatDipg #Remembertheirnames #Enoughoftherare #braintumorawareness #GoGrayInMay
Thank you @mr_realestate_k for going gray in may! . May is 🧠 Brain Cancer Awareness Month! #zoeygoesgrayinmay . Help us to spread awareness!!! #repost this or be creative in your gray gear!!! Use your voices and your platforms to help us to spread Awareness! . People ask how can I help? What can I do? It’s not always about donations! Here is an opportunity for you to get involved for the cause!!! . Wear your gray and post with our free downloadable sign 🪧 or repost this on your platform. . Participate in @zoefiasraceforawareness . Remember to tag us in the post and use the hashtag #zoeygoesgrayinmay . . . 🧠 Brain Cancer Ribbon is Gray. This campaign is to bring awareness to Brain Cancer. . More info and sign up is in bio📱 . . . #zoeygoesgrayinmay #lovezoey #zoefiaalexandriafoundation #zoefiaalexandria #braincancer #brain #brainhealth #braintumor #braininjury #brainscience #childhoodcancer #braincancerawareness #gogray #gograyinmay #pediatriccancerawareness #braincancerawarenessmonth #braintumor #braincancersucks #braincancerfoundation #realestate
Honoring our brain cancer warriors today and everyday🎗 #braincancerawareness #BBFkiddos #GograyinMay #pediatriccancerwarriors
Prayer request here: https://www.caringbridge.org/visit/julydotson/journal/view/id/6648d084c3b59928bcb3b0f8 The boys celebrating Kolter’s last night as a two year old. ✌🏻 #itsjulyyearround #kolterthekidd #gograyinmay
💚May is 🧠 Brain Cancer Awareness Month! The last 6 days are dedicated to @zoefiaalexandria as she passed away at the age of 6! #pineoblastoma . #zoeygoesgrayinmay . Help us to spread awareness!!! #repost this or be creative in your gray gear!!! Use your voices and your platforms to help us to spread Awareness! . People ask how can I help? What can I do? It’s not always about donations! Here is an opportunity for you to get involved for the cause!!! . Wear your gray or repost this on your platform. . Participate in @zoefiasraceforawareness . #zoeygoesgrayinmay . . . 🧠 Brain Cancer Ribbon is Gray. This campaign is to bring awareness to Brain Cancer. . More info and sign up is in bio📱 . Please Note Statistics are always changing, we encourage everyone to do their own research. . #zoeygoesgrayinmay #lovezoey #zoefiaalexandriafoundation #zoefiaalexandria #braincancer #brain #brainhealth #braintumor #braininjury #brainscience #childhoodcancer #braincancerawareness #gogray #gograyinmay #pediatriccancerawareness #braincancerawarenessmonth #braintumor #braincancersucks #braincancerfoundation #blackhealth #bob
Today is May 18th and National Brain Cancer Awareness Month! We are on a mission to bring awareness to all cancers but, this one especially, because our sweet Ariel fought glioblastoma, a type of brain cancer. We will be sharing a brain cancer fact each day of May to help spread awareness. Please show your support by going gray with us! 🩶🩶 #wellyeah #gograyinmay #braincancerawareness
Choroid plexus tumors are very rare pediatric brain tumors. These tumors can be both benign or malignant. Choroid plexus tumors are most common in children under 1 year old. You will notice slight differences in symptoms between brain tumor types due to tumor locations and how they impact they brain. Photo of Sammy is from June 21, 2017. Day 246 of hospitalization, and since diagnosis. This was a HUGE day for Sammy. He got his pig tails removed, his broviac central line. No more central line! Which officially marked Sammy's end of treatment!! He got his end of treatment MRI, and it was NED. Meaning he had no evidence of disease. Sammy had spent the last 4 weeks in intensive inpatient rehab working with a speech therapist, feeding therapist, occupational therapist, and physical therapist. Learning how to adapt to the world despite his new challenges. And we spent Sammy's time in rehab readying our home to prepare for his long-awaited homecoming! #forevergotyoursix #hopeforsupersammy #supersammystrong #morethan4 #childhoodcancer #medulloblastoma #gograyinmay #greymatters #braincancer #forever6 #raiseawareness #unexpectedlife #braincancerawareness #posteriorfossasyndrome #cerebralmutism
Guess who will Climb the Hill at CureFest in Washington, DC? Emily Dulworth will climb the Hill in September 2024. We are so happy and confident she will make a difference. Also, we are happy for the new friendships she will make. Let’s keep going gray in May for brain cancer awareness. #GoGray #GoGrayInMay #BookForHope #WorthMoreThan4 #BecauseKidsMatter
Germ cell tumors come from reproductive cells and can develop in the brain or spinal cord. They are usually found in the pituitary and pineal glands. #joshuaswish #braintumorawareness #braintumorsawarenessmonth #GoGrayInMay #PediatricBrainTumor #ChildhoodCancer #childhoodbraintumor #QuickFacts #spreadawareness
May is Brain Cancer Awareness Month #gograyinmay #gogreyinmay #cancersucks #braincancersucks #braincancercaregiver #braincancerawareness #braincancerawarenessmonth #braincancerresearch #noonefightsalone #noforeader #twinforksreader
The fundraiser continues! Deep dish cookies with new added flavour.. Strawberry! Along with Strawnery Rhubarb mini Coffee Cakes. @zielmansgoodsandgifts #gograyinmay #braincancerawareness
More brain tumor facts from our friends at Brainlab! Please share and help us bring more awareness for Brain Tumor Awareness Month! 🧠🧠🧠 . #prayforgray #gograyinmay #gograyinmayforbraintumors #braintumor #braintumorawareness
Good morning! Today is the Buddy Run and it’s a special one for me (Lorna) because the is year, I am a runner too! Wish me luck! I’m running for Brady. He is a high school student who has been dealing with a stubborn brain tumor. I’ve gotten to know his parents a bit and this is such a beautiful family. They found me because they want to help advance research too. With everything Brady is going through, they are compelled to help make a difference. Brady is amazing. He’s kind and compassionate, funny, artistic, and a wonderful brother. He loves outdoor sports like snowboarding, mountain biking, surfing and swimming. He should be thriving. Cancer has taken a toll. Brady has been dealing with a high grade glioma since last July. He’s still dealing with seizures and treatment related nausea and fatigue. I wish all of you could know these families and kids like Brady. Cancer in children is especially brutal, but over and over again, I see their hearts grow bigger and they find a fierceness they didn’t know they had. One Day I hope this work we do makes it better for kids like Brady. #gograyinmay #childhoodcancer #glioma #SDbuddyrun #childhoodcancerresearch #samdayfoundation #onedaysamday
Brain Tumor Awareness Month: Why support the SBTF? "My family and I support SBTF because our lives changed forever when my mother-in-law, Barb Parsons, visited us for our daughter’s birthday and she seemed out of it. After several falls, we decided to take her to the emergency room, and it led to her being diagnosed with a Stage 4 glioblastoma. Sadly, she lost her battle with brain cancer just 5-weeks after diagnosis. Since then multiple Roswell residents I know have been impacted by this horrible disease. I appreciate SBTF’s mission and pray for research to lead to a cure and for families that are impacted to have this support network." ~Councilperson Mike Palermo
Gestern war ich wieder einmal bei meiner Freundin Bettina. Seit sie vor gut zwei Wochen die Diagnose "Hirntumor mit einer Lebenserwartung von etwa 18 Monaten" bekommen hat, ist mir einmal mehr bewusst geworden, wie wichtig es ist, sich einfach die Zeit für liebe Menschen zu nehmen. Tja, der Mai ist der Gedenkmonat für Menschen mit Hirntumoren. Und ich unterstütze die 'Go Gray in May' Gedenkaktion. Diese Aktion ist für mich in zweierlei Hinsicht besonders wichtig: Zum einen gelten meine Gedanken Alexandre Sax Gomes, der im Dezember 2022 mit acht Jahren an seinem Hirntumor starb. Durch die Unterstützung vieler Menschen konnte er sich innerhalb des einen Jahres, das ihm seit der Diagnose noch blieb, viele seiner Wünsche noch erfüllen. Er schrieb ein Buch, das bei uns im Verlag erschien. Und führte Tagebuch über seine Gedanken, Erlebnisse und Gefühle während seiner Erkrankung (Neuerscheinung am 20.Mai 2024) Meine liebe Freundin Bettina ist eine genauso unglaubliche Kämpferin wie Alexandre. Jeden Tag zeigt sie so viel Mut und Stärke, dass es mich zutiefst berührt. Und auch sie hat Wünsche und braucht zur Realisierung unsere Unterstützung. Deshalb habe ich eine Spendenaktion ins Leben gerufen, um Bettinas letzte Wünsche und ihre Beerdigung zu finanzieren. Jeder Beitrag zählt und hilft, Bettina und ihrer Familie in dieser schwierigen Zeit beizustehen. Ich möchte an dieser Stelle all den bisherigen Spendern von Herzen danken. Eure Unterstützung und Großzügigkeit sind überwältigend und bedeuten Bettina und mir unglaublich viel. Die 'Go Gray in May'-Initiative ist nicht nur eine Gelegenheit, Bewusstsein zu schaffen, sondern auch eine Möglichkeit, konkret zu helfen. Ihr könnt durch das Teilen dieser Botschaft, das Tragen von Grau oder das Spenden an die Aktion einen Unterschied machen. Lasst uns zusammenstehen und Bettina zeigen, dass sie nicht allein ist. Der Link zum Spendenkonto, unter dem ihr noch mehr erfahrt, spenden könnt und der natürlich auch herzlich gerne geteilt werden darf, kann gerne bei mir angefragt werden. Vielen Dank für eure Unterstützung! 💖 #jederhilftjeden #gograyinmay #spendenaufruf #füralex Illustration von Alex von @laguirreta
GO GRAY IN MAY . . . . . #gograyinmay #gograyinmayforbraintumors #braintumorawareness #braintumorawarenessmonth
Day 17 - Caregiver #braintumorawarenessmonth #GoGrayInMay Sometimes you just have a day. It goes by fast, yet seems like time stands still. You’re so busy, you become distracted from one task to the next. You forget to eat. Forget your own meds/vitamins. Forget to shower. Forget your own appointments/plans. Maybe even forget to give yourself self care. It can become trying at times… But no matter what, you put them first, because they need you. And you need them. #glioblastomaawareness #GlioblastomaResearch #brainup
Day 18 Brain cancer is the leading cause of cancer related deaths in children. Today is DIPG Awareness Day. Tell someone. May is Brain Cancer Awareness Month. Feel freree to share so others know too! #gograyinmay #braincancerawarenessmonth #dipg #childhoodcancer #childloss #davidsadventure #makeeverydaythebestdayever #whataboutkids #tough2gether #kpcrtf
Hi everyone! Halley here 👋🏼 In early May, our family was able to plant a tree in memory of Sean at his favorite golf course, The Bridges. This was something Sean was hoping could be done and we were thrilled when The Bridges supported this endeavor. It was a picture perfect day to honor him and the beautiful life he led. The kids were able to paint rocks to place next to the tree which they were so proud of! If you are down in Winona, stop and check it out! Better yet, come and check it out when you head down for our Sean Ryan Memorial Golf Classic! It will be the perfect time to reflect on Sean’s life and his legacy. ❤️ ✨ Today is DIPG/DMG Awareness Day. Diffuse Intrinsic Pontine Glioma (DIPG) and Diffuse Midline Glioma (DMG), are rare and aggressive forms of brain cancer, typically found in children and young adults. Sean had DMG - he knew the fight was going to be tough as his prognosis was poor, but he battled until the very end exhausting every option he had available to him. Help us spread awareness for DIPG/DMG and brain tumors in general. #GoGrayInMay
Today we dropped off goodie bags, as a small token of our appreciation to those that are donating blood at our CHOC Blood Drive tomorrow and next week, as well as Brea Fire Dept Engine 1 and 2 who have responded to two 911 calls this year for AJ. We love our community and are beyond thankful for all of the love and support you have all shown us, especially those who have gone above and beyond to help us save AJs life in times of need. ❤️🩹 Also, special thanks to the following individuals/companies for helping us put together some amazing goodie bags! Go follow and support them! 🥩Beef Sticks: @paleovalley 🥥Coconut Water: @onceuponacoconut @Charlie ☕️Coffee: @donfranciscos 🍪Cookies: @eatdeezurts 🎗️Custom AJ Stickers: @theyellowribbonproject 🥤Electrolytes: @drinklmnt 🍬Gum: @thepurcompany
Day 17: Solid shake out run this morning! Everything is set up for the #RBCBrooklynHalf tomorrow. Nothing to do now but get out there and get it done! 💪🏻🙌🏻👍🏻 #BrainTumorAwarenessMonth #BrainCancerSurvivor #GoGrayInMay #VeganRunner #NYRR #ABTA
Them: Any #weekend plans? Me: #HappyFriday #KicksAndGiggles #31DaysOfGrey #31DaysOfGray #FadeToGrey #GreyRibbon #BrainTumorAwarenessMonth #BrainCancerAwarenessMonth #BrainCancerAwareness #BrainTumorAwareness #BTSM #BTAM #Grey365 #BrainTumorSurvivorsAreDope #GoGrayInMay #GoGreyInMay #HOPE #H4GM 💫🧠💪
💔Layla's Legacy funds innovative childhood cancer research because "Your child has cancer" are words no parent should have to hear. #KnowTheFacts and support kids and families in this battle everywhere by sharing, commenting and following us! #LaylasLegacy #FridayFacts #GoGrayInMay #Faith #Family #Cure
when i was diagnosed they shaved off my hair. i cried and asked my mum if it would grow back pretty so i could still be a princess. she promised me it would. last night i was surprised by @oakleyraehandmade with this beautiful oilers @evanderkane dress she made just for me. i love it so much and when i wear it, i feel just like a princess. thank you for thinking of me 🧡💙🎗️ #childhood #childhoodcancer #childhoodcancerawareness #gograyinmay #princess #handmade #edmontonoilers #evanderkane #hope #sunshine #happiness #elevenyearsold #handmadeyeg #luckyshoes
Flag finally came in! We love you @mattfrey7 #gograyinmay #findacure
It's hard to see my #gograyinmay nails but I painted them in the back seat en route to my latest @mayoclinic appointment in support of all of the #braintumor organizations out there who are raising awareness to make lasting change for us, the brain tumor community. My check-up went well; things are looking and feeling fine. Minnesota is now warm and sunny and I am excited about the upcoming wonderful summer at home with family and friends.
#GoGrayInMay •May is brain tumor awareness month. •Gray is the colored ribbon used to represent brain cancer. •Brain tumors can be low grade, which means slow growing, or high grade, which means fast growing and most likely invading healthy brain tissue. Both van cause major health issues, including death. •Brain tumors are the leading cause of death for all pediatric cancers. It has surpassed leukemia. This is due to advancements in treatments for leukemia that have allowed more children to survive the awful disease. We can do the same for brain tumor treatments 🩶 Spread awareness to help find a cure 🫶 Source: @alexslemonade
Knox County Mayor Glenn Jacobs spoke about Go Gray in May for Brain Tumor Awareness today on his Friday update. Mayor Jacobs showed Bella’s image from East Tennessee Children’s Hospital as a representative of children in the area fighting and recovering from brain tumors. Thank you so much for acknowledging our sweet warrior and bringing awareness to such an important cause. #bellastrong #jpawarrior #bellasblessings #easttennessechildrenshospital #braintumorkids #mayorjacobs #knoxcounty #knoxcountymayor #knoxville #gograyinmay #grayformay #grayforbella #grayinmayforbraintumorawareness🩶
Today is #DIPGAwarenessDay, and we remember these sweet kids 💜 Diffuse intrinsic pontine glioma ( #DIPG) is the deadliest childhood brain tumor, with a five-year survival rate of less than 1% Every child deserves more than a 1% chance to survive. We must find a treatment that works for kids with DIPG. YOU can help give kids and teens a chance at a future: www.morganadamsfoundation.org/give/ In loving memory of Ariana, Ava, Bailey, Ben, Cooper, Jace, Juliana, Luke, Mary, Mia, Mason, and Piper 💕 #FundKidsCancerResearch #ResearchSavesLives #KidsCancer #MoreThanHope #BTAM #BrainTumorAwarenessMonth #GoGrayInMay #GoGold
May is Brain Tumor Awareness Month! May 17th is #DIPGAwarenessDay I don’t know what you call it, but on this DIPG Awareness Day we are spending more time in a hospital room getting this warrior some much needed fluids. July’s potassium was low today. So after his Avastin infusion he is receiving some potassium through his port. Hoping this coupled with his daily dose, we get this numbers up and we don’t have to be admitted. He’s in good spirits and is as always the real hero of the day. #ItsJulyYearRound #DIPGWarrior #DIPGawareness #ItsNoteRare #GoGrayInMay
Holden’s got hops (swipe to see)! A year ago, Holden was diagnosed with a rare nervous system tumor called a schwannoma. He had a resection and chemo and this month he’s wearing his #GoGrayInMay shirt to help raise awareness about brain tumors. All shirt proceeds help support direct patient and family needs: www.gograyinmay.net 🧠 #OHSU #Doernbecher #ChildhoodCancerAwareness #BrainTumorAwareness
Saw an old classic Chevy cruising down a county road this afternoon… It should have been y o u . Also hearing about lots of kids gearing up for their final summer break, before starting senior year, and making big plans for their futures… Our hearts explode with pride for them all, but are breaking at the exact same time as we long for y o u . DIPG is a thief. It’s a monster. It’s the very worst chapter of your story that didn’t even deserve to be written. We miss you, Wyatt. We fight for you. We are going gray in May for you. 🩶 Y O U are #WyWeFight. Always. And forever. #GoGrayInMay #WyattsWarriors #BrainCancerAwareness #Warrior #AllTheKids #SuperSamFoundation
DIPG Awareness Day. DIPG deserves a day. Diffused Intrinsic Pontine Glioma is a horrifying diagnosis. A diagnosis few recognize, but one we should all know. This diagnosis is a death sentence, and it is a death sentence specifically for young children. It is a brain tumor that has NO CURE. It has a ZERO SURVIVAL RATE. Hospice care, paliative treatment, and quality of life are the words heard by parents whose children are given this grave diagnosis. In our journey with Sammy, we have walked alongside numerous DIPG families. I strongly believe that if we can find a treatment, a cure, for DIPG, we would be able to cure other terminal brain tumors. Like Sammy's leptomeningeal spread. We stand with those fighting DIPG. They deserve more. They deserve better. They deserve a chance to fight. A chance at a future. A chance at life. Please support these foundations to support the DIPG fight. The Cure Starts Now Jack's Angels Foundation The Morgan Adams Foundation Michael Mosier - Chad Tough Defeat DIPG Smashing Walnuts Julia Barbara Foundation Photo is of Sammy on May 23, 2017. Day 217 of his hospitalization and since diagnosis. This is on day +25 of his bone marrow transplant (stem cell transplant). The day he was discharged from Bone Marrow Transplant!! And FINALLY discharged from the oncology floor. But he wasn't discharged from the hospital just yet. During the last 25 days in transplant, Sammy needed 9 neupogen shots to boost his cell growth. He needed 6 platelet transfusions and 3 red blood cell transfusions. He engrafted on day plus 12. But it took another 13 days to get the numbers needed to be discharged. This photo also clearly shows his shunt line, how it traveled under his skin. #forevergotyoursix #hopeforsupersammy #supersammystrong #morethan4 #childhoodcancer #medulloblastoma #gograyinmay #greymatters #braincancer #forever6 #raiseawareness #braincancerawareness #posteriorfossasyndrome #cerebralmutism #dipg #may17
The most common brain tumor type as a whole is a glioma. Not all gliomas are malignant, but most are malignant. Gliomas are broken into several types. Some impact adults, some impact children. High grade tumors are fast growing, while low grade are slow growing. Photo of Sammy is day 192. April 28, 2017. Transplant Day. The day Sammy got his own stem cells back. That little syringe of pink fluid is his stem cells. It was given to him slowly over a set period of time. It is given extremely precisely. And then we wait to see if his body take them or engraft. Sammy had endured several days of super high dose chemotherapy leading up to this day. One of the drugs he received was thiotepa. This chemotherapy drug required Sammy to have a shower every 6 hours for 3 days. These showers were painful. He also had to have special dressing on his central line so as not to cause wounds. This chemotherapy treatment wiped his entire immune system. This type of stem cell transplant is really called a rescue. A stem cell rescue. As without it, Sammy would not have recovered from the chemotherapy given and would have died. In the cancer world, this transplant day is celebrated as a new birthday. As getting all new cells that give life to our bodies. Sammy's rebirthday is actually on Logan's birthday (Sammy's little brother). So a very special date. Logan turned 2 on this date. April 28, 2017. #forevergotyoursix #hopeforsupersammy #supersammystrong #morethan4 #childhoodcancer #medulloblastoma #gograyinmay #greymatters #braincancer #forever6 #raiseawareness #unexpectedlife #braincancerawareness #posteriorfossasyndrome #cerebralmutism #stemcelltransplant #bmt #bonemarrowtransplant #rebirthday
A lil casual gray for my drs appt today… 🩶 Breathed a small sigh of relief, as I met with my new NS today. Prayed a small but mighty prayer 🙏🏾 that the appt would go well and that I would feel the same security and compassion I felt when I met Dr. Zucc 9yrs ago and he answered it. 🙌🏾 I really can’t stress how GRAYtful I am for the care I have and continue to receive from UCHEALTH 🥹🫶🏾 #gograyinmay #braintumorawarenessmonth #btam #ggim #braintumorsurvivor #31daysofgray #may #gray #graymatters #gogoldandgrayinmay #ucgni #neuroscience #listentoyourbody #jeremiah2911 #billisbelievers🙏🏽✨ #fromtumortotriumph🤕🙌🏾 #iamyourone☝🏾❤️
I previously shared that there are over 120 types of brain tumors. But not all develop in children, not all develop in adults. When looking at the catagories of brain tumors, the Mayo Clinic focuses on 7 key groups of pediatric brain tumors. I will spend the next few days sharing about each of these types. Each with its own diagnosis, with its own symptoms, treatment, and outcomes. Photo is of Sammy on April 6, 2017. Day 170 since diagnosis and of being inpatient. Sammy was about 2 weeks onto his 5th and final round of high dose chemotherapy with the Headstart III protocol. Sammy frequently required blood product transfusions. Typically, he required blood and/or platelets. Blood was needed if his hemoglobin count got too low. And platelets were needed if his platelet count dropped too low. In the period of a year, on 48 different days, Sammy received some for of blood product or multiple blood products. It will take me 8 years of donating regularly to equal 48 donations of blood. 8 years for me to gift back the bare minimum of what Sammy needed. #forevergotyoursix #hopeforsupersammy #supersammystrong #morethan4 #childhoodcancer #medulloblastoma #gograyinmay #greymatters #braincancer #forever6 #raiseawareness #unexpectedlife #braincancerawareness #posteriorfossasyndrome #cerebralmutism #donateblood
The challenge with brain tumors is getting treatment to effectively reach the tumors. Treatment to cross the blood brain barrier. Sammy received high dose chemotherapy in hopes of it breaking through that barrier and reaching the tumor bed. The Ommaya port is a line that accesses into the brain. Instead of using a standard port or other central line that goes to the heart. Sammy did not qualify for an Ommaya port because of his shunt. His shunt was an automatic disqualifier to be on the trial. But the Ommaya port would have been a relapse option, not a front-line treatment as it was in trials at the time he was diagnosed for relapses. Photo is of Sammy on day 138 since diagnosis and of his inpatient stay. March 5, 2017. Sammy had just finished his 4th round of the chemotherapy cycle. And would soon start his 5th and final round of the Headstart III protocol. Sammy was uncomfortable and in pain from the drugs being given. Sammy was frustrated with the loss of his abilities. Not being able to do what he once could. His body would get sores and rashes. He was in pain. It hurt him to be held or touched. He would have periods of tachycardia. He was on several nausea medications, just trying to keep him hydrated and feeds down. Sammy was a trooper through all his treatment, but his screams haunt me. There was nothing I did that could help ease the suffering. Only could watch and pray, praying I could switch places so I could take the pain and suffering away. This is a picture of my child just crying, screaming in his sleep. That is what haunts me. It haunts me. I hear these moments, ones where I could do nothing. This is childhood cancer. And the trauma I carry. #forevergotyoursix #hopeforsupersammy #supersammystrong #morethan4 #childhoodcancer #medulloblastoma #gograyinmay #greymatters #braincancer #forever6 #raiseawareness #unexpectedlife #braincancerawareness #posteriorfossasyndrome #cerebralmutism
Not all brain tumors can be surgically removed. Some are in locations that make them inoperable and impossible to remove. Leaving only chemotherapy, radiation, and/or alternative therapies as options. This can be true of both benign and malignant tumors. Making even benign tumors deadly. When Sammy relapsed, he had tumors that were inoperable. One located in the thalamus area of his brain. This took surgery off the table. And required a balancing act of treatment using radiation. The balancing act was between harming and helping Sammy. Sammy's dad was diagnosed with a pituitary brain tumor on April 7th, 2022. Surgery is risky, as one major risk is blindness due to the area of the tumor. He has been on medication for 2 years. And we believe it has finally stabilized after several medication dose increases. This medication, even if effective, will be a lifelong medication. Surgery may become the option if the medication is ultimately ineffective. Picture is of Sammy is on February 12, 2017. Day 117 of his diagnosis and of his hospitalization. This was taken during a window of good days. Right before Sammy started his 4th cycle of his chemotherapy protocol. At this point, we were working regularly with speech therapy, feeding therapy, occupational therapy, and physical therapy. Supporting Sammy in his recovery, as he moved through the diagnosis of posterior fossa syndrome and cerebral mutism. #forevergotyoursix #hopeforsupersammy #supersammystrong #morethan4 #childhoodcancer #medulloblastoma #pituitarytumor #gograyinmay #greymatters #braincancer #forever6 #raiseawareness #braincancerawareness #unexpectedlife #posteriorfossasyndrome #cerebralmutism
The standard of care for pediatric brain cancer is decades behind. Sammy endured a treatment protocol that averaged the chemotherapy drugs at 50 years old. The oldest was developed in 1951, being Methotrexate. The newest being Carboplatin, a drug we used during transplant protocol, was developed in 1986. The rest 1959, 1959, 1963, 1978 & 1983. In the year 2016, we had NOTHING better to give. And treatment course is still the same in 2024. As Headstart protocol is still used as standard of care in treating young children with medulloblastoma and several other pediatric brain tumors. At the time of Sammy's diagnosis, there were no open trials for newly diagnosed children with medulloblastoma who would not receive radiation initially. So, we had to use a standard of care protocol. Sammy received the Headstart III protocol. But some hospitals were just starting to use Headstart IV. The big difference was 1 stem cell transplant vs 3 transplants. At relapse, we only had one Phase 1 trial in which Sammy fit the qualifications in New York. But we weighed the options and decided to stay home, keep Sammy home. Instead of dividing our family for months and months, and Sammy be inpatient again. We chose quality over quantity. We chose to chase living. You can't live life to full while stuck inpatient for the remainder of your days. So, we chose paliative treatments instead. Which had the same statistical probability anyhow. It was not an easy decision. We called a couple dozen hospitals. Got a couple second opinions. But Sammy's situation was far from ideal, and he was excluded from most trials because of his shunt. We faced the reality that Sammy was terminal. That our hands were tied. And our son would die due to a lack of treatment options. Since Sammy's death, the Right To Try Act has been passed, which allows for terminal patients the right to access non-FDA approved treatments that have passed a phase 1 trial. This may have changed things for Sammy and given our family more options. This legislation was a huge win for the childhood cancer community, but it still only gives access to terminal children.
ACCO publishes and distributes a book specifically aimed towards DIPG patients. Register here for the DIPG book: https://www.tfaforms.com/4699752 Learn more about DIPG: https://www.acco.org/2021-dipg-awareness-day/ #GoGrayinMay #braintumorawareness #DIPGawareness
This Brain Tumor Awareness Month, we are proud to highlight the courageous stories of Loretta and Denise, sisters who each faced a daunting diagnosis of benign brain tumors at the age of 66. Their personal battles began distinctly but converged with the expert care of Dr. Daniel Kelly at Pacific Neuroscience Institute. Denise's ordeal started unexpectedly during a yoga session that ended in a painful blackout, leading to months of frustrating medical consultations without answers. It was only after a dentist recommended a brain MRI that she discovered she had two meningiomas needing urgent neurosurgical attention. Loretta’s journey began with a simple accident at home, which led to persistent and severe headaches. Despite initial reassurances from her doctors, her intuition told her something was amiss—a feeling confirmed by an MRI ordered by a new doctor she consulted out of desperation. Their stories not only highlight the struggles often associated with diagnosing brain tumors but also the relief and gratitude that come with receiving life-changing care. Both sisters underwent minimally invasive surgeries within a week of their initial visit to Dr. Kelly, dramatically improving their quality of life and providing them a path back to normalcy. Today, Denise enjoys gardening and playing pickleball, while Loretta, although she faces challenges like altered taste, has adapted and continues her passion for baking with her family's help. Their resilience and the compassionate, responsive care they received exemplify the importance of patient advocacy and trusting one’s instincts regarding health. Join us in celebrating Loretta and Denise’s journey during Brain Tumor Awareness Month. Their story is a testament to the power of medical expertise combined with the indomitable human spirit to overcome adversity. For more on their incredible journey and how it may inspire others facing similar challenges. Read the full story here: https://www.pacificneuroscienceinstitute.org/blog/brain-tumor/two-sisters-one-scary-diagnosis/ #BrainTumorAwarenessMonth #GoGrayInMay #BrainHealth #MeningiomaAwareness #PatientStory #HealthcareHeroes #GratefulPatients
I’m thankful every single day. I was one of the lucky ones. May is Brain Tumor Awareness Month #greymatters #GoGrayInMay
Thank you for going gray in may! #period ! . Some participants don’t have instagram but we appreciate you sending in your pics. Camera 📸 . May is 🧠 Brain Cancer Awareness Month! #zoeygoesgrayinmay . Help us to spread awareness!!! #repost this or be creative in your gray gear!!! Use your voices and your platforms to help us to spread Awareness! . People ask how can I help? What can I do? It’s not always about donations! Here is an opportunity for you to get involved for the cause!!! . Wear your gray and post with our free downloadable sign 🪧 or repost this on your platform. . Participate in @zoefiasraceforawareness . Remember to tag us in the post and use the hashtag #zoeygoesgrayinmay . . . 🧠 Brain Cancer Ribbon is Gray. This campaign is to bring awareness to Brain Cancer. . More info and sign up is in bio📱 . . . #zoeygoesgrayinmay #lovezoey #zoefiaalexandriafoundation #zoefiaalexandria #braincancer #brain #brainhealth #braintumor #braininjury #brainscience #childhoodcancer #braincancerawareness #gogray #gograyinmay #pediatriccancerawareness #braincancerawarenessmonth #braintumor #braincancersucks #braincancerfoundation
May is brain and spinal cord tumor awareness month and the grey ribbon 🩶 this is my daughters MRI picture. It took about 4 months to get a diagnosis cause spinal cord tumors are rare and I had to ask for more tests. Anyway it's good to be aware of the symptoms ❤️ #greymatters #gograyinmay #graymatters #spinalcordtumor #cnstumor #astrocytoma #fighter #childcancerawareness
May is Brain Tumor Awareness Month, and this week at GForce we wore gray to show our support for the thousands of people affected worldwide by participating in #GoGrayinMay for the American Brain Tumor Association @the_abta
We go gray to spark more conversations, fund more research, and save more lives. 🧠🩶 #gograyinmay #braintumorawareness #thecelebratelifefoundation
💚May is 🧠 Brain Cancer Awareness Month! The last 6 days are dedicated to @zoefiaalexandria as she passed away at the age of 6! #pineoblastoma . #zoeygoesgrayinmay . Help us to spread awareness!!! #repost this or be creative in your gray gear!!! Use your voices and your platforms to help us to spread Awareness! . People ask how can I help? What can I do? It’s not always about donations! Here is an opportunity for you to get involved for the cause!!! . Wear your gray or repost this on your platform. . Participate in @zoefiasraceforawareness . #zoeygoesgrayinmay . . . 🧠 Brain Cancer Ribbon is Gray. This campaign is to bring awareness to Brain Cancer. . More info and sign up is in bio📱 . Please Note Statistics are always changing, we encourage everyone to do their own research. . #zoeygoesgrayinmay #lovezoey #zoefiaalexandriafoundation #zoefiaalexandria #braincancer #brain #brainhealth #braintumor #braininjury #brainscience #childhoodcancer #braincancerawareness #gogray #gograyinmay #pediatriccancerawareness #braincancerawarenessmonth #braintumor #braincancersucks #braincancerfoundation
All day🩶Everyday kinda love😊 Stop in today! #Charliejoes #Sykesville #downtownsykesville #tshirts #shorts #crewnecks #hats #tumblers #engravedtumblers #leatherpatchhats #ponycaps #jeanshorts #ootd #screenprinting #screenprintinglife #embroidery #dowhatmakesyouhappy #gogray #gograyinmay #gograyinmayforbraintumors
Ependymoma is a tumor that develops from the cells lining the ventricular system of the brain or spinal cord. In children, it appears in the back part of the brain. Sometimes it can appear in the spinal cord. This cancer is the third most common cancer found in children. #joshuaswish #braintumorawareness #braintumorsawarenessmonth #GoGrayInMay #PediatricBrainTumor #ChildhoodCancer #childhoodbraintumor #QuickFacts #spreadawareness
LET’S GO BRYCE 🎉 For 2.5 years our buddy Bryce has been courageously battling a brain tumor. His family has experienced a rollercoaster of treatment plans, his side effects, and mixed prognosis, so to see him smiling from ear to ear and accomplishing this milestone brings great joy! His mother shared the sweetest post: “This moment right here... What many parents just consider part of life. Graduation day for me was a reminder of God’s miracle in the making. My sweet Bryce, look how far you’ve come, Graduating Pre-K! We have had a crazy year filled with so many ups, so many downs, so many changes. Yet through it all you wore that beautiful smile. You my dear... you’re truly my hero. Mommy is beyond proud of you.” Help us cheer on the graduate and celebrate Bryce 🎓 he is such a shining example of strength, determination, and HOPE. He is one of the reasons why we #gograyinmay 🩶 #braincancerawareness #braintumorawareness #givehope #withlove #childhoodcancer #charity *photos courteous of Bryce’s mom
🏈 Cheer for the Home Team! 🏈 We are thrilled to have 2️⃣ Clemson footballs signed by National Champion coaches available in our auction. Thank you Coach Danny Ford and Coach Dabo Swinney! Additionally, The Carolina Panthers have joined in to #fightbraincancer with a Miles Sanders Autographed Wilson ‘The Duke’ Football. Bid on these items and more at www.tannershope.org through May 31 at 10 pm EST! #GrayMay #fightbraincancer #SouthCarolina #GoGrayInMay #gograyinmayforbraintumorawareness #tannershope
Charlie's story in words and pictures shared by her mum. Charlie deserved more and sadly she is not alone, hundreds of children die every year from dipg and yet we continue to call it rare and do nothing to find a cure. The only people crying out for change are the parents who have lost their children, think about that, it is too late for their children, they are trying to save yours. 💜Today is DIPG awareness day in There's many of us trying to get today recognised worldwide....the lack of funding, lack of treatment, devastating statistics, and a disease that tears apart families. For all of the angels and current fighters please continue to help us in spreading awareness, and changing the amount of funding that goes into Pediatric cancer. 💜 💜 Such a hard thing to Go through from the start, being told you child has a minimum of 9 months to live, go home an make memories, cause there’s no treatment that will help, and watch my daughter deaerate that little bit more each day. My daughter is part of that 1% funding! I think about her every hour of every day. She should have a job be going out with her friends, booking holidays. i’ve missed out on so many milestones as a mum. I will always fight for a cure from that evil disease that took my baby, and hope that one day people don’t have to go through what we are going through.💜 #DefeatDIPG #Enoughoftherare #GoGrayInMay #DIPG #braintumourawareness
DIPG Awareness Day is observed annually on May 17th, during Brain Tumor Awareness Month. Every year on May 17th, the world comes together to observe DIPG Awareness Day, a day dedicated to shedding light on diffuse intrinsic pontine glioma (DIPG), a rare and aggressive form of childhood brain cancer. For families affected by this devastating disease, DIPG Awareness Day highlights the need for increased research funding and improved treatment options for the most lethal form of childhood cancer. With your help, we can “illuminate” a very dark period in the lives of many families, “enlighten” others regarding the importance of funding research in pediatric cancers, and “inspire” others to take up our cause in support of families facing pediatric illnesses! #GoGrayInMay #gogoldchildhoodcancer #DIPG #pediactriccancer #illuminate #enlighten #inspire #phoebelouisedooleyfoundation
The MONTH OF MAY is BRAIN CANCER AWARENESS month. Did you know that brain cancer research receives ONLY 1% of the federal cancer research budget??? 1%, WE CAN DO BETTER!!! Only 20-36% of people diagnosed with brain cancer will still be alive in 5 years. There are more than 125 types of PRIMARY brain cancers, meaning tumors that originate in the brain. Almost every type of cancer can have metastasis or secondary brain cancer! ◻️🎗️◻️🎗️◻️🎗️◻️ #GoGrayInMay #InMayWeWearGray #JacobDavid #ForeverFive #FightLikeaKid #BrainCancerSucks #CureCancer #PediatricBrainCancer #BrainCancerAwarenessMonth
#gabrielsmessengers #gograyinmay #btam
When life gives you lemons, grab some tequila and salt! #lifequote #gograyinmay #lemons🍋 #makethebestofit #gograyinmay #braincancerawarenessmonth
GO GRAY IN MAY 🩶 May is brain tumour awareness month. I will be posting a photo of my boy along with a statistic everyday this month in an effort to raise awareness. 64% of patients with a primary brain tumour survive 5 or more years. Covid was such a weird time. When Covid first hit he was “the vulnerable” with his trach and cancer so we really only left home to continue giving him his high dose vitamin c. All the precautions seem crazy now but at the time we didn’t know and it was all to keep him safe. It really slowed us down but we continued to have fun at home. We got all the gaming consoles, bouncy castles, power wheels, pools outside. His tumours yes were still growing but I truly believe the natural therapies slowed that down. #gograyinmay #braintumorawarenessmonth
May is Brain Cancer Awareness Month #gograyinmay #gogreyinmay #cancersucks #braincancersucks #braincancercaregiver #braincancerawareness #braincancerawarenessmonth #braincancerresearch #noonefightsalone #noforeader #twinforksreader
