Your support and contributions will enable us to help fill more Joy Days and Bucket List items for children fighting cancer, and will also help offset postage prices for this Inspire the World Challenge.
We are happy to announce that Avis Budget Group has chosen to Partner with Sydney’s Soldiers Always for their Inspire the World Challenge. Sydney’s Soldiers Always is a 501c3 nonprofit that works to enhance the lives of area children and families who have been affected by childhood cancer, FOCUSING on Bucket List items for critical/terminal children. With this Inspire the World Challenge, Sydney's Soldiers Always will post photos and stories on their website of children battling cancer, and the teams will be able to go to the Inspire The World Challenge tab on the Sydneys Soldiers Always website and choose a child to send a card, letter, or care package to. It would be great if you could print off a little map of where you are from and include that so that the child sees that they have support from across the US. You can also print out the child's photo (kind of like a Flat Stanley) and take a photo of you with it, with a note to inspire the child! There is also a donation link above if you can't send a package but would like to help monetarily. We are excited that these two markets have decided to bring JOY to these children's lives when there is little Joy to be seen while fighting cancer.
To respect these families privacy, and to not give out their personal home addresses, Please send all cards, letters, care packages, etc. to:
Sydneys Soldiers Always
C/O Dana Manley
11 Barbara Drive
High Hill, Missouri, 63350
Once we recieve the item, we will forward it to the child at their address.
If you are a part of a company that would like to join in and INSPIRE THE WORLD please contact me at email@example.com and we can tell you how you too can INSPIRE THE WORLD!
Delaney, 13 was diagnosed with B-cell Acute Lymphoblastic Leukemia (ALL) on June 18, 2019. She is in the first phase of a three phase chemo therapy treatment plan at St. Louis Children’s Hospital. The goal is that after the first phase, Delaney will enter remission and the remaining 2.5 years of treatment will eradicate her leukemia for good. She has a long road ahead of her, but Delaney has a positive attitude that is simply inspiring. Delaney loves all things music related. She’s a beautiful singer and talented actress. She enjoys playing lacrosse and hanging out with her girlfriends. She is an avid St. Louis Blues fan and enjoyed cheering them on to a Stanley Cup win this season. Tiffany blue and chocolate are a couple of her favorite things. Sister, Taylor Digman, age 23.
Iliana is 12 years old. She was diagnosed with stage 4 Neuroblastoma at age 5. She has Relapsed TEN TIMES. Yes, you read that right, she has relapsed TEN times.
For almost her entire life, Iliana has fought cancer. Can you actually imagine fighting for your life, most of your life? There are currently no treatment options for a cure in sight for Iliana. The chemo treatment she is enduring may only prolong her life. Iliana wants to continue to fight. Iliana will travel to Memorial Sloan Kettering Cancer Center in New York for extended treatment options and continue treatments available at our local hospital as well. Iliana is currently undergoing radiation and chemotherapy.
Iliana loves to Vlog, her favorite color is teal, or any blue really, and her smile lights up the room.
Sister Jayla age 18, Brother Jaamal age 19
Jayden is an 8 year old boy who was originally diagnosed with an optic pathway glioma on April 20, 2016. He did 19 months of weekly chemo and was declared to be No Evidence of Disease March 27 2018. Fourteen months later on May 1st 2019 his family learned his tumor was back and he now had a second tumor, a brain stem glioma. He was started back on oral chemo and consulted neuro surgery. Right now Jayden takes oral chemo daily and gets scans Every 3 months unless there is a cause for concern to get them sooner . He has weekly appointments to see his oncologist and he will be on chemo until May of 2021. Jayden loves the outdoors riding his bike, playing ball and playing police with his sisters. He loves legos and animals. He also loves to draw and color. He really enjoys car shows and going to baseball games as well.
Sister Kyrah age 13, and Allison age 4
January 8, 2019, Eleven year old Nathaniel was diagnosed with a brain tumor called medulloblastoma. Medulloblastoma is a cancerous tumor—also called cerebellar primitive neuroectodermal tumor (PNET)—that starts in the region of the brain at the base of the skull, called the posterior fossa. These tumors tend to spread to other parts of the brain and to the spinal cord. He has had brain surgery to remove the tumor. He has recently started chemo and radiation. He is so strong!! This boy is so full of life , and even through this hard time has managed to smile most of the time. He is fighting so hard to recover, but still has a long way to go! He loves video games. Harry Potter. Stranger things. Anything in the marvel universe. Sibling Makayla age 8
Elsa was diagnosed in 2015 with High risk Acute Myeloid Leukemia at the age of 5 years old. She went through 4 rounds of high dose inpatient chemotherapy and a Stem cell Transplant via her newborn brother’s cord blood in March 2016. She was recovering from her transplant and was finally able to go back to school when a routine bone marrow aspirate/ biopsy showed her cancer was back a full year after transplant. Her family flew to Seattle Children’s and Seattle Cancer Care Alliance to consult with one of the leading oncologists in AML treatment. In June 2017, a combination of targeted therapy, Revlimid, and a Donor Lymphocyte Infusion donated from her 1.5 year old brother put her back into remission. In December 2018, Elsa’s AML came back again after being a full year off treatment. This summer Elsa will partake in a clinical trial sponsored by St. Louis Children’s Hospital using Natural Killer Cell’s and a Donor Lymphocyte Infusion to treat her AML. For a third time, her 3 year old brother will be called on to donate. She likes reading, making slime, and tiny mechanical animals like the Zoomers you buy at Walmart. Siblings Claire age 6, and Eli age 3.
Trevor was diagnosed on Feb 12, 2015 with Medulloblastoma. He did many rounds of chemo, radiation and surgery. Trevor was No Evidence of Disease for over a year and on February 26, 2019 he was diagnosed as relapsed. He had surgery March 12 to resect his tumor and do a confirmation biopsy . He joined into a clinical trial and University of Florida. He is currently in treatment and will soon have a stem cell transplant. "You might hear your transplant called a stem cell transplant or a bone marrow transplant. A bone marrow transplant is a specific type of stem cell transplant. With a bone marrow transplant, the stem cells are taken from the bone marrow. With a stem cell transplant, the stem cells are taken from either the bone marrow or the bloodstream. (MSK website)"
When they did apharesis recently, they were collecting those precious cells. He needs to have 2 million for transplant. They wanted to collect 5 million and after 2 days ended up with 6.4 million cells. Enough for him to have if some die and later down the line if further treatment is needed.
"After your stem cells are harvested, you’ll get high doses of chemotherapy or a combination of chemotherapy and radiation therapy. This is called conditioning. The high-dose treatment kills cancer cells, but also eliminates the blood-producing stem cells that are left in your bone marrow.
After your conditioning, the stem cells that were collected will be given (transplanted) back to you. This lets your bone marrow make new blood cells.(MSK website)" Trevor just recently got to attend his senior prom and he graduated high school!
Ally was diagnosed and started chemotherapy for a tumor on her optic nerve at age three. She was supposed to complete fifteen months of treatment however at twelve months, her tumor started growing again so she switched chemotherapy regimens. Ally endured three years of chemotherapy and four different protocols as well as daily shots, several hospitalizations, countless pokes and a very involved brain surgery to remove a second temporal lobe tumor. She was done with treatment on August 4, 2014 and we celebrated. On January 13, 2016, Ally relapsed. She had so many protocols there were limited options as to how to proceed. Her team, consulted with several other teams, and identified a new oral chemo that she would take daily. That worked for a while but Ally developed a third brain tumor that was growing even more aggressively. After traveling to see many experts, another involved brain surgery and molecular sequencing, Ally started a sixth chemotherapy protocol on May 9, 2018. This one has been the most effective to date. All of the chemotherapy regimens have life changing side effects (some are short and some are long term, some are known and some will not be fully known until Ally ages). To date, Ally has lost all vision in her left eye and most of her right eye vision, she is learning braille and mobility at school and has a community of support from our local school, local community and friends we have met through our medical travel or virtually through online parent groups. If you want to follow Ally's story, updates are posted at Ally's Pals on Facebook.
6 (turns 7 August 10th)
Stage 4 Neuroblastoma
She was 4 when diagnosed
Chloe was a happy healthy 4 year old and then One day all that changed. Her whole world changed and she hadn't even lived long enough to have that happen. She has had countless tests, scans, IVs, surgeries, invasive procedures, chemotherapy, radiation, taken so much medication, been traumatized and had so much more happen to her. Throughout it all no matter how hard it was she smiled and laughed and fought like hell even when she didn't know it. Her fight is far from over but she's determined to win.
Bear Cottingham, 4 years old. DX at 6 months old. Bear was DX with inoperable brain tumor at 6 months old (Pilosyctic Astrocytoma) he has went through 6 chemos but none of worked like planned. He has had 2 debulk surgeries. 2 surgeries due to hydrocephalus 1 ending in shunt. He is scheduled for surgery Monday for shunt #2. We are waiting for next treatment plan to start after surgery. Here is link to his FB page https://www.facebook.com/BlessingsForBear/
Alexa Rodriguez is a very sassy and silly 3 year old. She was diagnosed last December 2018 at the age of 2.5 with acute lymphoblastic leukemia. We are being treated at the children’s hospital of Wisconsin. We will finish treatment in March of 2021!!!! We can’t wait.
She is our only daughter and she is so loved. She loves animals specially ducks and dogs. She likes to dance. She loves swimming and taking our pug for a walk.
John Martinez dx 5/17 with acute Lymphoblastic Leukemia T-all at age 13. EOT 8/2020. John is 15 now. He was an avid baseball player and was on his way to Cooperstown NY with his travel ball team. John never made it. During the physical they discovered the large mass in his chest. John will be starting Highschool this year after not being in school for almost two years. He has one more year of treatment to endure. He pushes through side effects and truly just wants to be a normal teenager. Unfortunately exhaustion hits hard and often times the pain in legs prevent him from a lot of activities.
Landon is 6 years old. He was diagnosed with Neuroblastoma at the age of 7 months. He battled for over 4 years, and finally reached NED (no evidence of disease) he remained that way for 17 months. In June 2019 he relapsed. He just completed radiation. Landon also suffers from autism.
Kendall is 5 and was diagnosed with acute lymphoblastic leukemia on march 29th 2019, just 8 days after her 5th birthday. We are 4 months into treatment and she is doing quite well. Shes still gaining strength back that she lost during the first month of the induction phase but she seems to get stronger and have more energy every day! We go to clinic weekly now and still have round 5 and 6 of methotrexate inpatient stays. She is one tough little lady. Her facebook page is 'courageous kenny'
Draiden Valencia is 10 years old. Dx July 2018 at the age of 9 with T-cell ALL. He is one of the strongest boys. You cant tell hes sick. He never complains and always wears a smile! He loves with his whole heart and had a lot of it to give. He has over come a lot if obstacles in this past year from dx to seizures to weightloss but he has overcome them all. He asks for nothing. Ever. Even though he deserves the world!
Bella is 12 yrs old was diagnosed with pediatric thyroid cancer on dec 13 2017. She is currently at camp periwinkle and we will discuss her recourance we just found out about when she gets home. Bella has been a medical kid he whole life she was born with 22q.11.2 deletion syndrome which caused her to be born with condinital heart defects at 3 we nominated her for make a wish disney right before her 4th open heart surgery. When she was diagnosed with thyroid cancer our world crashed she was absolutly amazing. I was broken she wanted to go sing in her school choir concert. She has beads of courage for her heart and cancer she has spent her life in hospitals and she is never scared in the last month she has had a small stroke, cardiology thinks its time for her 5th open heart and in all the imaging to check for stroke we found out she has active lymph nodes again.
Toby is 3, he was 2 at diagnosis on June 22nd, 2018. He started suddenly bruising one day and was diagnosed with T-cell ALL, a rare (especially for his age) type of leukemia. Even though he seemed healthy when I brought him to the ER his bone marrow was 97% cancer cells. He is a delight! His nickname is Smiley Blue and he loves his nurses and they love him. He wants to be a nurse when he grows up and loves to help draw his own blood and give himself Heparin. He often puts on "shows" for the nurses with his 5 year old brother Silas by performing songs from The Greatest Showman, detailed choreography and all. He says he's Iron Man because his port is right in the center of his chest, just like Iron Man's port (arc reactor). He's afraid of nothing and doesn't believe in gravity and is soley responsible for every one of my gray hairs. We love him to pieces.
He will be almost 6 when he finally finishes treatment on November 1st, 2021
This is Xander. He was diagnosed with stage 4 high risk Neuroblastoma in January at the age of 3. He turned 4 in March. He loves to be goofy, he is sensitive and shy at times. He loves Lightning McQueen and race cars. Monster trucks are also a favorite. He has been a champ throughout his treatments, even though he has been refractory thus far. We are on our last treatment option before we start looking into clinical trials. His cancer is in his legs, pelvis, abdomen, chest, and skull. We have scans in a few weeks to see if there has been any change.
Sam was diagnosed with ALL on March 29, 2019 at the age of 20 months. Thankfully he is doing well and we are ready for the next three years of chemo.
Gracie Phillips was diagnosed with Hepatoblastoma June 15, 2018 at age 4. She is currently in treatment at UVA. Gracie received a liver Transplant on October 12, 2018. On what should have been her last chemo cycle in January 2019, a spot of hepatoblastoma was found in her lung. She was started on a second protocol of chemotherapy. She is getting ready to start cycle 6 of the 2nd protocol. Gracie loves anything outside and loves animals (especially raccoons). But she also loves anything with pink and sparkles! JoJo Siwa and Descendants are her favorites right now! She does have a Facebook page #GracieStrong.
Addie Trujillo, age 4. She has been in treatment since Nov 2017 (at age 2.5) and will finish treatment in February. Addie has Down syndrome. Addie is the light of our family. She is amazing! She never gives up, never gets discouraged, takes everything in stride! She does struggle when she doesn't feel well but she perseveres! She makes friends and brings a smile to everyone everywhere she goes. I wish there were more people in the world like Addie, it would be a much better place. Just a side note: 2.1% (so roughly 1 in 50) of kids with Down syndrome are diagnosed with leukemia by age 5. This is a HUGE increase compared to kids without Down syndrome, about 20 times higher I believe. I like to share that fact because many people have no idea about this!
is battling relapse refractory Neuroblastoma he has been battling since age 2 year 2012 he is now 9 and still battling !
We are from south Texas and get treatment at cook children’s in Fort Worth TX
Jackie is a joyful, happy, full of love, spunk, with a strong personality 11 year old. She is currently under treatment at Phoenix Children’s Hospital. She was diagnosed with AML (Acute Myeloid Leukemia) on 6/11/19 at 10 years old. She turned 11 on 6/23/19. She did the induction round of chemo and ended up in the PICU on 6/22 on ECMO (life support) and a breathing tube due to lung and heart failure. She was taken off life support after 5 days and the breathing tube was removed on 7/4/19. She is alive and getting stronger each day. On 6/26 we found out the classification of AML. She has AML with NUP98-NSD1 fusion is associated with FLT3ITD. We are told that these mutations are rare as separate mutations, and to have both is even more rare. The prognosis for them separately is grim there for her chance of survival is low. Chemotherapy is not effective on the type of AML she has. We are told that a bone marrow transplant is her only chance. The Doctors have checked the national registry and there are no matches. Both of her brothers were tested to see if they are a match to donate their bone marrow to her. They are both a 50% match and we meet with the bone marrow transplant Doctor on Friday to schedule her transplant and ask questions. She still has a very long road ahead of her.
"Super" Jack - 3.5 at dx on 7.3.18 with Tcell ALL. Currently 4.5 - one year down 2.5 to go!
Declan was diagnosed with infant ALL at 9 months old. He’s currently 2.5 years old and finishes treatment in November 2019. He’s so strong and tough. Deals with all of the pokes and medicines with no complaints.
Lyla was diagnosed with brain cancer (JPA) at 2 and is just starting her third round of chemotherapy at 10 years old. Cancer has left her with quadriparesis, but she's a strong, smart, and persistent kid!
Weston is 4 years old and in treatment for DIPG. He was diagnosed in October of 2017 at almost 2 and 1/2 years old. Weston is our feisty, chai tea, avocado, Mickey Mouse loving little man that brings us so much joy. Through radiation, chemo, clinic appointments he hasn’t let anything get him down. We are almost 2 years out and his tumor is still stable.
Ryan, 6 has Acute Lymphoblastic Leukemia. He was diagnosed on 2/28/17. He was diagnosed at 4 years old. Ryan is the true definition of strength. He’s 6 year old now, back at school playing hockey and baseball. Ryan has 10 months of treatment left and continues to fight like a true warrior. Ryan is a true inspiration to everyone he comes in contact with.
Devin is 2 ½. He has a rare genetic disorder, Aarskog syndrome, as well as a complex medical history. At 14 months old he had an MRI to rule out a Chiari malformation as the cause of breathing issues that he'd had since birth. They found that he did indeed have a CM, they also found a lesion in his brainstem. Five months later at 19 months it was diagnosed as a pilocytic astrocytoma in his pons. He has been on chemo since August of 2018.
He is the youngest of 4 brothers, their ages are: 18, 12, and 5. He is the sweetest and orneriest toddler ever. Brain cancer and chemo barely slow him down. As a newborn we gave him the title of "tiny but fierce" and he lives up to it every day.
He has a Facebook page: https://www.facebook.com/Devins-Story-our-tinybutfierce-199315597494797/
Weston was diagnosed at 7 months old with AML (acute myeloid leukemia), he was also found to have an unfavorable gene mutation giving him a poir prognosis. Weston underwent several rounds of chemo before going into a bone marrow transplant (BMT) with his mother as his donor (May 2018). Sadly, not even 3 months post transplant Weston relapsed. He also had developed a chloroma (a solid mass of leukemia cells) near his brain. Weston was deemed terminal and he ran out of chemo options. After an extensive search, his mother found a phase 1 immunotherapy trial for him. Weston was the first post BMT patient on the trial and was given more of his mother's cells. It was not an easy fight; sepsis, heart failure, and graft vs host disease left Weston fighting for his life on a ventilator for a month. Weston kept on fighting though and came through it. He has been in remission for 8 months (August 2019). Yet, he continues to have battles. His bone marrow has been failing to produce enough cells for his body to function properly. He recently received more of his mom's stem cells in hopes to strength his marrow. He continues to be a strong little warrior.
Laila, 1 years old has Aml leukemia. Diagnosed on September 5, 2018. Laila went through 3 rounds of chemo , and moved forward to bmt. We are currently on day +235 , and unable to return home due to a few virus . She’s doing amazing overall .
Gavin Dubar: 16 years old. Originally diagnosed 5/3/15 with Pre-B ALL, EOT 9/14/17. Relapsed on 7/15/19, same cancer. Gavin is the funniest kid you’ll ever meet, bringing a smile to the face of anyone who sees him. He is loved my many and admired by many more. He is a child who will find the very best in every situation, finding a reason to smile.
Quinn was 6 years old when diagnosed in September 2018 with ALL leukemia (T Cell). He has finished frontline and is currently in maintenance, end date of treatment is February 2022.
Maceo Garcia, he is 4 years old, was diagnosed at 3 with Acute Lymphoblastic Leukemia. We are still in treatment, with a little over 2 years to go. Maceo is our joy! He has always been so outgoing, fun-loving and a dinosaur fanatic! He loves playing with his sister Diaz and pretending he’s a T-Rex or Godzilla. He is always trying to make us laugh with his silly jokes and sense of humor! Cancer isn’t gonna get this boy down! It picked the wrong kid!
Braeden Emery age 10. Originally dx 9/5/17 with anaplastic ependymoma grade 3 rela+. Finished treatment 12/15/17. Relapsed.. 2nd tumor found 9/28/18, surgery 12/3/18, finished treatment 2/19/19. Currently being treated for radiation necrosis. Waiting for the medicine to work some so they can see where the new tumor is and how big it is.
Olivia Grace. 5yrs old, currently in treatment for acute lymphoblastic leukemia.
Hannah Ramos is 21 months old! She was born with rhabdomyosarcoma on her spine she was officially diagnosed at 10 days old after we found a mass on her back on one of my ultrasounds so we have her two days later and started biopsies and scans on thanksgiving week so we weren’t able get results sooner! She was misdiagnosed at first because it could have been infantile fibrosarcoma or rhabdomyosarcoma treatment was only 10 weeks for infantile which changed to 42 weeks! And then that changed to another 24 weeks for maintenance which was delayed when she had a stroke at 13 months old due to a chd her tumor was removed March 2018 and had her chd closed March 2019 she finished treatment the day she turnt 18 months old!
Kayson Smith currently 4 almost 5 Diagnosed 3/10/2018 at 3.5 years old with TCell ALL. Kayson is an only child, he was born 9/25/2014 to a single mom. He loves the beach, all things superhero’s, food, and video games. He loves to spend time with his cousins and any chance we can get the money, we go to the beach. Our hope is to one day (after treatment is done) move to the beach! All through out frontline treatment, when he was down we managed to get him to the beach and you wouldn’t even be able to tell anything was going on with him, he was so happy!
Jaylynn Leigh Bray is 10 years old and was diagnosed with High Risk Pre B Cell ALL Leukemia on March 26th, 2019. My amazin little warrior has been nothin but brave & strong threw this gut wrenching journey already!!! Her "need to know" mindset blows me away every single day. From procedures, to chemos, to meds, she's wants to be aware of everything that is goin on with her & her little body!! It's bitter sweet to experience. She's my hero!
Jaylynns loves the color purple, her baby brother, her pets, unicorns, rainbows, arts & crafts, & all things magical.
William Albright he is 12 years old, he was just diagnosed May 9 of this year with Osteosarcoma. The tumor covers his left knee and 6 inches of his femur. He just started his 2nd round of chemo (each round 4-5 weeks) at Children’s Hospital of Philadelphia. He will be undergoing limb salvage surgery the beginning of September followed by aggressive therapy and an addition 8 months of chemo. He also has some small nodules in his lungs however in order to biopsy they would need to crack his chest open so with his leg being the priority they will continue to monitor the longs to see if they respond to treatment. William is the youngest of 4 brother Dan 25, sister Andriena 20, sister Emma 15. His favorite color is red he is an avid fan of the Philadelphia Eagles and loves fishing and gaming on his Xbox
Hannah Marie Giraldo will turn 6 on August 6 and has been diagnosed with Bcell ALL on April 8 , 2019
We have 2 years left in treatment! Praying for nothing more. She is a girlie girl, loves princesses and Disney. And she is the toughest cookie I know with the kindest and most amazing soul. Always a smile on her face. She wants to use part of her birthday money to make goodie bags for the children that spend a lot more time inpatient than she does!
Haydin Thompson age 8 He was age 5 when diagnosed with pre b acute lymphoblastic leukemia.
Phillip was 9.5 years old when diagnosed in January 2019 with Hodgkin’s lymphoma 2B. This of course is unusual for a kid at this age to have Hodgkin’s. Hodgkin’s lymphoma is more common in teenagers and young adults. Phillips journey hasn’t been easy, it took 4 biopsies and 18 days before we knew what kind of cancer Phillip had. Phillip was accepted into a clinical trial where he received 5 rounds of chemo every 21 days we were inpatient, his chemotherapy included brentuximab, doxorubicin, etopophas and vincristine, he was also on high doses of prednisone. Once we finished chemo Phillip received 14 radiation treatments for his mediastinal mass, clavicle and neck mass. We are now inpatients waiting for his post scan results. Phillip also suffers from ADHD, a cataract in his right eye, tick disorder, speech delay. His life has not been easy but I can say he’s the strongest, bravest person I know.
Eleanor was diagnosed with Acute Lymphoblastic Leukemia in April of 2018 right before her fourth birthday. She’s now just turned 5 and will complete treatment in May of 2020. Eleanor has shown incredible strength and resilience throughout treatment. She has two sisters who are 9 and 2 that she adores. She is very interested in the wilderness and anything creepy crawly! She manages to find the joy in even the darkest days and if she can’t find it, she creates it.
Angel Cheatwood age 15. Diagnosed 4/20/2017 High Risk BCell ALL. Currently in long term maintenance but we will complete treatment 08/14/2019. She will have spinal tap 08/06/2019 and last round of vincristine given in your port. She is being tested for neurological issues with learning disabilities due to chemo and also she has started a therapist for psychological issues. She is going into 10th grade with advanced 11 grade literature.
Jay is currently in treatment for medulloblastoma. He is 13 years old. Jay was diagnosed in March and has had 2 surgeries to remove the tumor. He had 6 weeks of daily craniospinal radiation treatment and is undergoing 7 rounds of chemotherapy now. He loves playing video games and watching tv. He is a super sweet and fun kid. He works hard in PT and OT to regain the skills he lost from the surgery.
Stellan Piggott age 7, was diagnosed July 2018 with TCell Lymphoblastic Lymphoma and CNS3, stage 4, we were devasted but he is so strong and right now has started maintenance.
We pray it stays away, Stellan just turned 8 years old this month. He is going into second grade, we live in frisco, TX, he loves all things nerf guns, biking with his little brother and little sister and playing outside. when he grows up he wants to be an airline pilot! He is treated at Children’s medical Center in Dallas by Dr. Winick
Grace Church. She is currently 14 years old and is fighting alveolar rhabdomyosarcoma for the second time. She was first diagnosed at 11 years old and was in treatment for over a year. She was in remission for about 9 months and then relapsed. This second time fighting has been harder for her because she knows more of what is going on and she is so discouraged. There isn't much out there for kids fighting again. I am so beyond thankful for Make -a - Wish and programs like that. But if the cancer comes back what gives them hope and joy the second time around or God forbid times after that.
Zach Fant is 16 and was diagnosed with T Cell ALL June 24, 2019. He is a fun loving kid who enjoys drawing and video games. He is the oldest of my 2 children. He is a junior in high school which he will have to miss most of due to treatments.
Kadi is 10 and was diagnosed with high grade osteosarcoma on April 3rd, currently in treatment. She loves to draw, paint and really do anything creative as well as swim and enjoy the outdoors, especially fishing and canoeing with her Uncles!
Alayna Bretsik is currently in treatment for Neuroblastoma stage 4, She was diagnosed Feb 18th 2019. She is 2 yrs old. birthday is October 24th.
She has her 2 stem cell transplant coming up & I like to find ways to make her smile. She will be stuck in the hospital for about 80days. That means 80days away from her 8 month old sister. So anything to put a smile on my childs face would be greatly appreciated.
Megan Vess age 17.diagnosed in 2012 with ALL Leukemia.then diagnosed again in Dec 2016 with Glioblastoma. she is in current treatment for the Glioblastoma. Megan is an outdoor girl, she loves to hunt,fish,and travel the country.she likes to hike,kayak,and just be outside.she has 2 adopted siblings.she is pursuing photography in the fall and hopes to travel and take pictures of the great outdoors and wildlife .
Ryan is 13 years old and was diagnosed 6/27/19 with HR acute B cell lymphoblastic leukemia. Ryan has played lacrosse for 6 yrs and loves the game. The above picture is of Ryan in his summer lacrosse jersey while in the hospital right after diagnosis. He has an awesome positive attitude at present time.
Toby is a 12 year old boy who loves to cook and play video games and watch cooking shows. He was initially diagnosed at 2 and a half years old (2009) with ALL. He was considered standard risk and it was the “best” kind to have. He went about 4 years off treatment when he relapse in 2017 just before his 10th birthday. He fought hard and ended treatment in January 2019 yet his “last” spinal tap showed abnormal cells. It took 6 months to be considered a full relapse in which he was at 75% in bone marrow and 85% in his spine. He’s been fighting for nearly his whole life and this second relapse has been probably the hardest on his little body, most likely because of all it’s already been through. We are scheduled to get car t early September and prayer with all our might that this is the last of it.
Maeve Rae-Bognar ALL diagnosed at 6 in 2018.
“Maeve has a velocity of charm. Her family jokes that she can make friends through storefronts with smiles and waves. She was outrageously healthy before being diagnosed with acute lymphoblastic leukemia at the age of 6. She was in Tae Kwon Do and ballet and about to run the mile long race in her her home town fair. Leukemia has siderailed 800 days of chemotherapy but Maeve is determined to not let it stop her. She becomes diabetic with her quarterly iv chemo and still takes daily chemotherapy pills. Maeve is the best little sister to her big brother. They are the best of friends and help each other through thick and thin.
Tucker Age 2 Pre B ALL, diagnosed at age 2 Tucker is a energetic and loving little boy that loves tractors and trains. He also loves music and dancing. He is only 4 months into treatment, but his strength astounds me. He remains happy and playful most days.
Piper Irias was diagnosed with Stage 4 Neuroblastoma on May 16, 2019 she is 2. Piper has a brother and sister who she loves to be with at all times. She loves to sing Baby Shark and the finger family song all day. This little girl has such the fight in her and can light up an any room with her smile. Her favorite things to do are to blow bubbles, color, watch Paw Patrol and Pj Masks and snuggle in her blankets. She just got finished round 4 of her chemo and will be having her tumor resection on August 22.
Jorge, age 16 was diagnosed with Chondroblastic Osteosarcoma on June 28th, 2017 at 14 years old. He received aggressive chemotherapy until February 2018, he rang the bell and had short 3 months cancer free, that stopped when in June 2018, we learned that he relapsed with 2 little nodules in the lungs, the ones they resected,. After that our fight never ended perhaps we try another kind of chemotherapy and follow 2 trials, my son's cancer came back between every 2-3 months, he always fight with a smile, and with hope that one of this treatments will work, well 2 months ago they put him in hospice, and a month ago, they stop the chemo pill he was following because more tumors appeared now in his skull and mandibule. The doctor told us that he thinks our #JorgeStrong has 2-3 weeks but Jorge don't let Cancer define who he is, he is a fighter.
Name: Jacob Porter
Diagnosis: Philadelphia Chromosome Positive Acute Lymphoblastic Leukemia (Ph+ALL)
Age at Diagnosis: 10
Jacob is one of 6 children, in October of 2017 he was diagnosed with a rare and aggressive form of leukemia, Ph+ALL. That first year Jacob spent more than 26 weeks inpatient. One of Jacob's biggest battles that first year was a very invasive fungal infection that landed him a 12 week stay. He spent 4 weeks in the PICU, 9 of those days were spent on a ventilator over his 11th birthday and the remaining 8 weeks on the Oncology floor. In November of 2018 while still in active treatment he relapsed, due to his fungal infection his only option was more intense chemotherapy. 8 short months later Jacob relapsed again. While he is still fighting his infection it has improved enough that his team is comfortable moving forward with CAR-T. Jacob recently suffered seizures due to Methotrexate Neurotoxicity from his latest Lumbar Puncture. Being the trooper he is, he is doing his T Cell harvesting today (8-13-19). Jacob will begin preparing for his new cells on 9-20-19. There is still a chance he will need a Bone Marrow Transplant, his 7 year old sister, Addie, is his perfect match
Age 10 DX T cell lymphoblastic lymphoma AgeDX 9
He was diagnosed with T cell lymphoblastic lymphoma September 2018. He had been having some respiratory issues to various degrees over the past few months. His illness led to several diagnoses that included everything from strep throat and pneumonia to allergies and asthma. When none of the prescribed treatments worked, more advanced testing became necessary. they then discovered a mass in his chest scan. Biopsies were performed to determine exactly what we were dealing with. The mass appeared to be a lymphoma which is essentially a tumor of the lymph node. At 6” wide and 2” thick, the mass was exceedingly large for someone of his size and either did not appear, or was not detected 6 months prior. It was putting pressure on his lungs, his heart, and his airway, which explained all of his issues and lack of response to the various medications. The positive in this was that his upper and lower scans were clear which indicated that the cancer had not spread beyond the identified mass, and his cell counts look good. His bone marrow test came back with 5% of cells in his bones. His survival rate is around 85% with treatment remaining until 2021.
Lexi was diagnosed in December 2018 with B Cell Leukemia at 2 1/2 years old and will continue fight through February 2021, 2 days before her 5th birthday. Lexi is funny and very caring, and has fought everyday since diagnosis to beat this and continues to amaze us each day!
Age- 18 Diagnosis-Osteosarcoma Age at diagnosis - 16 Nick was diagnosed with osteosarcoma spring his sophomore year of high school. After several surgeries and 9 month of chemo, he returned to school just in time to finish his last few months of junior year. Unfortunately, his cancer returned nine months later. He had an emergency forequarter amputation of his left arm, and surgery to remove four tumors that had spread to his lungs. Despite his struggles, he always has a smile on his face and truly inspires not only us but the entire community with his constant smile.
Ivorie Rose, she’s 5, she was just diagnosed at 5. She has stage 4 Wilm’s Tumor. Ivorie Rose has always been a very active little girl. She had a big water fight in our back yard with her siblings and some friends on June 15th, and the next day she started peeing blood. After taking her to several doctors appointments followed up by an ER visit when the blood in her urine increased drastically she was given a CT and a referral to a pediatric kidney specialist. On July 17th she was given the diagnosis of stage 4 Wilm’s Tumor. The main tumor is much larger then her kidney and she has two small nodules in her right lung. We started chemo 2 days after her diagnosis and hope to be doing removal of her left kidney and the tumor in two weeks. Ivorie Rose is our brave warrior girl. She is our family’s Hero.
Anthony Di Fiori 4yo Diagnosed w High Risk BCell Auto Lymphoblastic Leukemia in Sept 24 2018 at 3yo. Anthony is a very energetic little guy, he loves his family, dinosaurs, Marvel superheroes & animals. Since diagnosis Anthony had to relearn to walk & speak. He is my youngest of three children & the fire in our family.
3 years old (turns 4 October 23rd)
Stage 4s neuroblastoma then “relapsed” at 18 months with stage 4 high risk neuroblastoma
Dx at 2 days old
Nora was born with stage 4s neuroblastoma. When i was 7 months pregnant, they found a mass in her abdomen. She was delivered on my birthday and sent to thE NICU for testing. It was determined the mass was on her abdomen and suspected neuroblastoma at 2 days old. They confirmed and diagnosed her with stage 4s neuroblastoma after a biopsy/adrenalectomy at 2 months old. At that time it had already spread to her liver and ended up in her bone marrow. She had MRIs every 3 months and ultrasound/labs every month for a year before they decided to move her to every 6 months. Her liver ended up clearing on its one as well as the bone marrow shortly before she relapsed at 18 months old a couple months before her first 6 month set of scans. It was confirmed a relapse to her right petrous bone into the right cerebellopontine angle and internal auditory canal. She immediately started COG protocol for stage 4 high risk neuroblastoma. She went through 6 rounds of chemo, stem cell collection, 2 stem cell transplants, 18 days of radiation and 6 rounds of immunotherapy. She also had multiple admissions due to neutropenia and line infections. One between chemo and stem cell transplants landed her in the PICU where she was almost septic with colitis, cdiff and neutropenic. It was one of the scariest hospitals stays for Nora & I. Nora received her first set of NED scans at the end of COG protocol in September of 2018. This was a huge deal for us as it was the first time she had no evidence of disease since birth
Nora is an extremely smart, energetic, sassy, full of life 3 year old who LOVES music, dancing and Disney princesses. She has severe anxiety of the hospital, bloodwork and some testing. It really helps when she sees familiar faces but her anxiety increases the older she gets and more aware she is of what is happening. Due to the location of her relapse tumor, she has no hearing in her right ear. Due to chemo she has severe high pitch hearing loss which requires her wear a hearing aid.
She is currently still NED 10 months later with scans next week! She is currently enrolled in a year long clinical trial called Neuroblastoma Vaccine trial at Memorial Sloan Kettering Hospital in NYC.
Myleigh McDowell Age 8 Diagnosed at age 7 Myleigh, a outgoing girl who loves to dance was diagnosed with Wilms Tumor, Diffuse Anaplasia in 2018. After 10 months of treatment, she was disease free and rang the bell in January 2019. Sadly, after 4 months, Myleigh relapsed, not to the lungs. She is currently undergoing treatment with the best attitude. She is brave and an inspiration to us all.
Finn Diagnosed with retinoblastoma (eye cancer ) At 3 months old He is 3 yrs old and still being monitored for tumors. We go in monthly or bi-monthly under anesthesia to see if any new tumors have been found. He is legally blind. Retinoblastoma is a treatable cancer if detected early. It is usually detected by a glow in the eye that is seen in pictures. Finn loves music, dancing, trucks, playing with his twin brother and trains. His favorite is his soft blanket that he sleeps with every night.He is the sunshine of our lives. He goes through his days with a huge smile and is always singing.
Ashlyn Rogers. Age 10. Fibrolamellar Carcinoma. Diagnosed in January 2019 at age 9. Ashlyn was a normal healthy kid up until around the time she turned 9. She started having some pain in her shoulder. The pain would come and go. She was referred for physical therapy. Months would go by with no pain but it would come back. Late fall of 2018 it was diagnosed as pneumonia and did get better with treatment only to come back a short time later and again be diagnosed as pneumonia. In January we were sent to the children’s hospital who also agreed with pneumonia diagnosis at first. We were told she’d likely need a simple lung draining procedure. When she got her first cat scan her tumor was discovered. The MRI showed the tumor started in her liver and grew up all throughout her diaphragm. Ashlyn had her surgery in early February to remove the tumor. She started chemo in March. She’s currently on her 6th round of 21 day intravenous chemo therapy. She does have some remaining cancer and the chemo is helping to shrink it. Our plan going forward will depend on scam results after this round of chemo and 2 more. Fibrolamellar Carcinoma is a rare liver cancer. It’s usually found in young adults so it is also rare for a child Ashlyn’s age to have it. Ashlyn is a sweet, kind hearted child. She loves cats. She’s creative and loves art and making slime. Her favorite color is teal.
Kyson was born with a rare form of cancer on July 17. 2017! Called langerhauns cell histocytosis. LCH doe short. He has been in remission for about a year! We are actually doing a MRI this Thursday for possible active LCH! He started with weekly chemotherapy treatments then slowly spaced out to every three weeks! All he has ever known is doctors and pokes! But with it all he always smiles through it in the end! He is our one in a million! His siblings are Emerson 8,
Name: Grace Marie Cooper
Diagnosis: Stage 3 (Wilms)
Age of Diagnosis: 6
On Monday, April 29th we took Grace to Patient First for what we thought was constipation. However, the doctor there advised us to take her immediately to St. Agnes (the closet hospital to the Patient First). While there they ran a few test & took a lot of blood. She also had to get an ultrasound done. After waiting about 5 long hours it was revealed that she had a mass 13 1/2 centimeters attached to what the doctors in the ER believed to be her kidney. After being given the news she informed us that we needed to go to John Hopkins Children’s Center immediately where they found a tumor which they believe to be cancer.
On Wednesday, May 1st she had emergency surgery where they removed the tumor along with her right kidney. While we waited on the results of the biopsy we believed God for whatever the outcome will be. After waiting about 7 long days, her doctors finally informed us she has stage 3 wilms (childhood kidney cancer) but could go for stage 4 but because it was diagnosed as favorable stage 3 became the stage for Grace.
We were informed that Grace’s tumor was the size of a 34 week old fetus. Nobody but God allowed our 6 year old child to walk around with a tumor this size & feel NO PAIN!
Chemotherapy & radiation treatments have been difficult for our baby. We’ve spent a great amount of time inpatient but she’s still in wonderful spirits through it all.
Ian Age - 5 Diagnosis- Pre B Acute Lymphoblastic Leukemia Age at diagnosis - 3 Ian's diagnosis came as a shock to our family. The day he was diagnosed I thought he may have had strep throat. The past 14 months have brought us challenges that we could have never imagined, however, Ian has been such a fighter. Ian has battled this with a smile on his face and strength that I didn't know was possible. He will continue maintenance chemotherapy through August 2020 so his fight continues. His life is starting to become a little more normal as he was cleared to start kindergarten! Ian is our superhero!
Rose Ramirez is 4 years old. She was 3 years old at diagnosis. She is fighting stage 4 neuroblastoma. Rose is a sassy fun loving Disney Princess. We are from Orlando Florida but relocated to Pennsylvania for Rose’s treatment last November. She loves playing with her brother, dressing up, and running around. She can’t wait to go back to Florida once she’s done with treatment. So far she’s had to do 10 cycles of chemo, 5 cycle of immunotherapy, and surgery. Right now she is waiting on her platelets to increase before she can start more chemo. She’s about a month behind bc her platelets are having a hard time recovering
Railyn 4 B cell ALL she was diagnosed in June 2019
Railyn is a fun loving girl who loves glitter, unicorns l, minnie mouse, and my little pony. She love doing arts and crafts and going shopping. Ever since she been diagnosed it's been tough on her to do stuff she loves she been feeling so crappy or in to much pain, but she still finds a way to smile most days. She has been so amazing through everything going on. She loves when we get mail for her its her favorite thing! She loves to open the boxes and look at the cards. She has been a true superhero through this! And she is gonna kick cancers butt! Now a lil about how we found out, it all started out with a lump in her neck in April I believe, well they said it was an absess and nothing more gave us antibiotics and said If it comes back to return and well look again. Well a little over a month goes by and her neck starts to swell again so back to chop. They do more testing and are still stumped. Finally on the 6 of June the doc comes to us and asks if we can speak more privately. I was so confused but went it the room sat down and that's when the words came out her mouth..... I still get tingles this day when I think about it. But we been fighting it from that day on! And were ready to be cancer free!
Kay is 7 years old. Kay was diagnosed with acute Lymthoblastic leukemia tcell standard risk. on 10 17 18. She loves riding bikes, coloring video games and elephants. She has 2 older brothers. This whole thing has shocked our family and I have never felt so alone in my life. Kay has lost her hair 3 times.
Brady Bustrum, age 10, diagnosed with Thalamic Glioma Grade 3/ Brady was a happy boy growing up and at the age of 5 we noticed some changes in his behavior. We were told he had a low grade thalamic glioma. He was in 18 months of chemotherapy which stunted the growth of his tumor. The tumor was one that no doctor wanted to biopsy or operate on. We removed his port and went about our somewhat normal life until about a year ago when we were told that the tumor was growing again. Unfortunately, treatments were not working. We decided to do a biopsy of the tumor. It was a rare grade 3 glioma that needed radiation and a trial drug. We have 6 more radiation treatments and will start the trial drug sometime in September.
Walker Anderson is a outdoor living, extremely active 6-year-old! He is the light of our life and an amazing kiddo! Walker was diagnosed with standard B-cell ALL on June 21st, 2019 at Colorado Children’s Hospital. He is currently on consolidation. We drive 3 hours to Denver once a week for chemo, spinal taps, etc... He rarely complains and always wears a smile! Walker “walks in strength” everyday and will beat cancer for sure!
Nora Saltsgaver Age: 4.5 years old Diagnosis: Neuroblastoma and Opsoclonus Myoclonus Ataxia Age of Diagnosis: 2.5 years old. Nora was diagnosed with neuroblastoma and an very rare (1 in 10 million) neurological condition called Opsoclonus Myoclonus Ataxia back in May of 2106. Nora had tumor resection surgery nearly immediately after locating the tumor as her health condition was declining so fast. Since resection she has been on high dose steroids and has continued to have monthly infusions for the past 2+ years with no particular end in site. While Nora's cancer journey is hopefully over it's the cancer that caused her neurological condition that there is currently no cure for. It's not just the cancer that has been rough for her it's all of the byproduct things that she acquired or has had to go through because of the cancer. However, through all of this she has been so brave and strong during this process and she continues to flourish through all of everyone's prayers!
Sulley is 17 years old
Pre B Cell ALL
15 years old at diagnosis
Sulley is a 17 year old boy with refractory Pre B Cell ALL, first diagnosed in 2017. He’s been through standard treatment, two car t cell transplants and additional chemos to try and get him into full remission. Sulley has not been in complete remission since he was originally diagnosed. The ultimate goal for him is to get to a bone marrow transplant soon and hopefully he will be cured. Sulley has suffered a lot along this journey, more than any kid should ever have to. He’s a great kid who has won the hearts of many supporters and he certainly deserves to be cancer free! Please follow “Sulley’s Journey” on FB to get a better glimpse into Sulley’s fight!
Dallas was diagnosed with Stage 3 T-Cell lymphoblastic Lymphoma with a 7x9 cm mass in his chest on his 14th birthday on March,13,2019. We as a family were beyond devastated! He has already endured so much with two years of treatment left. He has shown me what a true super hero really is!!! He loves hunting, fishing and of course video games.
Zoe Mercury age:3 age of diagnoses: 3 diagnoses: pituitary astrocytoma and optic nerve glioma
Zoe is a outgoing, charismatic, smart, bubbly fun, spunky 3 yr old all words used by others to describe her. June 13th Zoe was diagnosed and required emergency surgery. It was discovered she had two tumors one impairing her vision on her optic nerve pathway the other on hypothalamus . In addition, it caused (hydrocephalus) fluid on the brain. Her first surgery was back on June 15th she spent the time since recovering in the hospital. Her second surgery was July 13 th which involves more resection of the tumor .Zoe began chemotherapy August expected to last more 13 month. Zoe’s interests are Spider-Man making slime and playing with her 4 other siblings
Zoey is 9 and was diagnosed with
Acute Lymphoblastic Leukemia (with iAMP21 making her high risk)
at age 8
Her diagnosis started out with her having a seizure on 7/11/19 (with no history of seizures) she was rushed to SSM St Clare, she stopped breathing and was intubated. She was then air lifted to SSM Cardinal Glennon where we received the diagnosis of ALL on 7/12/19. She remained inpatient at CGCH until Mon 8/12/19. She spent her 9th birthday in the hospital. She had to have 6 blood transfusions and 4 platelet transfusions. We are now home and she has been so happy to be here and in her own bed and play with all her toys/games.