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Aaliyah

Mascots for a Cure is a tiny and amazing break from a families difficult reality with childhood cancer. They came into our lives and unite like family. These amazing people allowed our daughter Aaliyah to live her dream of opening up her bakery before her passing and we are extremely blessed for everything they had allowed her to see. Mascots for a Cure is important to us because they bring joy not just to the kids but to the whole family. We as a family believe Mascots for a Cure is something every kid needs to experience at least once in their life because of the amazing difference they make.

Aaliyah’s favorite activity: Baking and collecting Shopkins
Favorite Princess: Princess Tiana
Favorite Movie: Nacho Libre

Layla

Layla was diagnosed with metastatic Ewing’s Sarcoma on February 4, 2016, after several months of unexplained abdominal pain and struggling to keep on weight. Layla had been tested for a host of diseases including Type 1 diabetes and Celiac Disease. By January, Layla was getting severe stomach and back pain that would wake her up in the middle of the night and was only relieved by heat. The night before a scheduled ultrasound, while in the tub trying to relieve her pain, her mother noticed a lump on her back. At the ultrasound the following morning, images of the lump were taken. Less than an hour later, the nightmare began for Layla’s entire family. Her pediatrician called and said that Layla was being admitted immediately to AI DuPont Children’s Hospital’s oncology floor to have a CT scan and an MRI. By noon the next day, it was confirmed that Layla had a large cancerous tumor on her 9th, 10th, and 11th ribs as well as twelve spots in her lungs. They weren’t sure yet, but the oncologist was fairly certain that it was Ewing’s Sarcoma, a very rare and very aggressive form of bone cancer. Her family was told not to look up any information about it until they knew for sure. When it was confirmed, and Layla was officially diagnosed, she was given a 30% chance of surviving five years. There is no cure for Ewing’s Sarcoma. There is a standard treatment that has a good response rate, but Ewing’s Sarcoma almost always comes back, and for relapse there is no protocol.

Layla was accepted into a clinical trial at the Children’s Hospital of Philadelphia that included 14 rounds of intense chemotherapy, a resection surgery to remove the remaining tumor and affected ribs, and eight days of whole lung radiation. She is still currently in the maintenance phase, which consists of an infusion of an experimental drug every three weeks. She will be completely finished with treatment in May of 2017, but as of her latest scans she has no signs of cancer! She will continue to have frequent CT scans and MRI’s for the rest of her life. The chemotherapy that Layla and so many other children have to endure causes many late effects. Layla is waiting on a neurological evaluation for short term memory problems as well as learning difficulties. She also now suffers from neuropathy in her legs and feet, which can cause pain and trouble walking.

Through all that Layla has endured, however, she has remained the shining light in her family. Her positivity and smile has helped carry her family through this difficult time. While facing the unimaginable, Layla began to use the mantra “No biggie!”, and shared this with her friends in the oncology ward. She hopes to inspire other kids to be brave and keep smiling.

Mascots for a Cure means so much to our family. Not only do they fight tirelessly to raise awareness for Childhood Cancer, they bring so much joy to children and their families all around the country. They give so much hope and to the Childhood Cancer community, and I have no doubt that they will continue to make a huge impact in the fight against Childhood Cancer.

Riggan

Riggan was diagnosed with Acute Lymphoblastic Leukemia on February 12th, 2014. The day before, he was taken to his doctor after he had complained about his jaw hurting. He had never had an ear ache before and his family just thought that maybe, at age four, he was having one and didn’t know how to verbalize that. After the doctor checked him out, she reported that other than a low grade fever, she couldn’t find anything wrong with him. She suggested they do a blood test just to be sure she wasn’t missing something. Not long after blood had been drawn, she came back into the room informing his family to quickly return home, pack a bag, and head to the emergency room at OHSU as soon as possible. The blood results indicated a low platelet count and a dangerously low Hemoglobin count – so low in fact that she was surprised he was functioning.

Riggan’s mom called her husband who immediately left work. I contacted a friend who agreed to take care of the older children and headed home to pack a bag, not having any idea of what would be learned in just another day. After arriving at OHSU, Riggan was immediately placed in isolation and given a blood transfusion. After more blood was drawn for future testing, he was moved to the pediatric oncology ward at Doernbechers Children’s Hospital. Up to that point, no one had used the word “cancer” yet and minds were full of “what ifs” and questions no one wanted to ask out loud.

Riggan slept through most of this as the medical staff continued to do what they needed to do to make him comfortable. The next day, the doctors came to his room feeling confident in a diagnosis after reviewing all the blood work they had gathered. They led the family into a conference room and it was then that they finally were able to confirm that Riggan had been diagnosed with Leukemia. As a range of emotions rolled over and the journey of processing this life changing news hit home, the doctors began to educate on the reality of this disease and specifically the type of Leukemia that Riggan had in comparison to other types out there. The doctors promised that they would not only take good care of Riggan but also spend lots of time making sure the emotional health of the family was looked after. The family met with doctors for over an hour that day and almost every day to follow for the next two weeks, learning about Riggan’s treatment and how to best care for him for the next three and a half years – the duration of normal treatment for boys with ALL.

On that first day, three and a half years sounded like an eternity – nearly impossible to even think that far ahead in that moment.  But here they are – just two months away from being DONE!  In a blink of an eye, those years have flown by. And while there were tough days and hard months and, if we’re being honest, lots of time spent in prayer battling the worry and fear, Riggan has been the toughest and bravest little man around.

The first few months of treatment were the most difficult as Riggan endured the hardest rounds of chemo and steroids right away. Steroids are a little gross. With these, he experienced weight gain, bloating, mood swings, and food cravings like you would not believe. For one solid month bowls of food would need to be left by his bed as he would wake up multiple times a night, hungry for pretzels, macaroni, and cheese pizza.  During this first month Riggan was on “house arrest,” as his family called it, unable to leave the house and unable to have visitors very often, and only if they were healthy and properly sanitized. During this time Riggan had very little energy and spent a lot of time watching movies or reading books. He needed to be carried anywhere he went because the nerve damage in his feet (a side effect of one particular type of medicine) made his feet hurt and his legs tired.

Despite all of this, Riggan handled his treatment well, celebrating every new round of chemo with cake as a way to find something to be thankful for.  This helped the family and made it seem like they were getting closer to the end goal of being cancer-free. It is hard to say how many rounds of chemo Riggan went through in those first six months but every single one was a little different. For the first few months, Riggan (in pre-school at that time) couldn’t attend school, but as soon as he was off isolation and his counts were high enough, he visited as much as he could.

Summer came and Riggan was home and indoors for most of it in isolation.  However, he was allowed to take one vacation to watch his daddy rodeo in Montana. On another round of steroids at the time, he requested a plain hamburger patty for EVERY single meal of the trip . Riggan’s dad has been a rodeo cowboy since he was in high school and Riggan definitely got that “cowboy gene.” We say that because never once has Riggan shed a tear when his port has been accessed. Never has he had trouble swallowing his pills. Never has he gotten sick from chemo. It really is amazing how well his little body has handled this and what an amazing brave attitude he has had throughout the process.

Now that Riggan is just three months away from the completion of his 3.5 year treatment, he is looking forward to not having to take medication every night, getting to play some contact sports, and having much more energy. Currently, Riggan is a lively, happy 1st grader who loves Minecraft, playing with legos, and playing with his friends. We are so thankful for how God has blessed and protected Riggan throughout this process, for the people and organizations like Mascots for a Cure that have come into our lives throughout the last three years, for the support of our community, for advances in medical research that allow children like Riggan to get better, and for good health and a long happy future ahead.

 

 

Sadie

Sadie was diagnosed with leukemia in November. She and her family have spent the last couple months helping her fight against it.  Hearing that your child has cancer is something no parent should ever have to do.  Sadie is very strong and her light shines so brightly as she presses through this journey.  Her brothers are always willing to help care for her.  Through all the visits to the doctor and all the hospitalizations/procedures her family is hopeful.

Sadie's family
Sadie’s family

A Quote from Sadie’s Mom:

We are hopeful because she is strong.  We are confident she is receiving the best care possible.  We are blessed because of the amazing support our family has received from friends/family and organizations like Mascots for a Cure!!  When families are living through a difficult and stressful time, it is so helpful to be supported.  Mascots for a Cure offers families the opportunity to cultivate positive experiences together.  It is so important to make memories that are fun during this time. It is so special to spend time together.  We appreciate the efforts of Mascots for a Cure and their mission to love on children with cancer.

Gabriel

Meet the Renteria family.  They were devastated on November 22, 2016, when the youngest of their family, 9 year-old Gabriel, was diagnosed with Rhabdomyosarcoma cancer, and their lives changed forever.  The tumor is in the orbit of Gabriel’s right eye and after a biopsy was found to be cancerous.  He was immediately treated with radiation and chemo.  The whole family spent thanksgiving in the ICU. On top of that, the week of Christmas he had neutropenia and was hospitalized. After managing to get strong enough, he was released on December 23, 2016.  Since his diagnosis they’ve been in and out of hospitals, and he’s struggled with the side effects of the chemo.  It’s an emotional roller coaster for his parents, as well as his siblings, feeling so many different emotions they never knew even existed.  All they can do is continue to try and cope daily.

Gabriel is a HUGE stuffed animal collector.  He calls them his “family” and names them all.  His name picking is quite unique because he names each and every one of them and doesn’t forget their names. His room is beyond full of stuffed animals, and in fact he rotates what animals sleep on his top bunk.

Mom Rosanna, Dad Gabriel, brothers Nick & Aaron, sister Miranda, and our brave little one Gabriel (Jr)

Quote from Gabriel’s Mom:

Mascots for a Cure is a dream to Gabriel.  To interact with life size (stuffed-like) animals brings a HUGE smile to Gabriel’s face.  To hug them, look at them and interact with the mascots is a memory he will never forget.   These are the memories we want him to have as he goes through battling cancer.  We want him to think of the happiness he felt when he interacted with the Mascots and not the pain he felt of chemo.

Mascots for a Cure is a unique and amazing group of beautiful people who are truly a blessing to the children they make smile.

Max

Max is a sweet, but tough little dude. He has a contagious smile that can light up a room and a giggle to match it. He loves all things for boys – trucks, dinosaurs, building with Legos, cars… you name it!

Max wasn’t acting like himself for a few days and his family thought he had a cold or the flu. They took him to his pediatrician and were told to go to CHOP for blood work. Max and his mom stayed there for 8 days after receiving the heartbreaking news that he had leukemia on December 23, 2015.

What was supposed to be a fun winter with a trip to Sea World turned into a 2 week stay at the hospital to get Max back on his feet and feeling better. They came home on January 1st and have been adjusting to their new way of life at home with his brother Jacob and family.

In the beginning, Max was diagnosed with Standard Acute B-ALL Lymphoblastic Leukemia and started treatment. As of January 27th, his diagnosis has been changed from ‘Standard’ to ‘Very High Risk’ due to tiny molecular levels of leukemia remaining in his marrow after induction treatment, which means he will have a more aggressive treatment plan.  The time frame for treatment is still the same – a very long 3 1/2 years.

Please check in on Max through his care page and send all the positive juju and good vibes you can to help Max and his family fight through this.

Max is the bravest, strongest, toughest little dude out there. He has a super silly, crazy personality and an infectious giggle that puts a smile on everyone’s face. Besides this Max is a true sweet heart and awesome hugger!

We have a new Courageous Knight and his name is Max the Brave!!!  Look out Cancer – you have met your match!

Quote From Max’s Mom:

Mascots for a Cure came into our lives last summer when we were invited to be in a music video shoot along with other cancer warriors and their families.  Although we ended up spending most of the day hiding a scared Max from the Phillie Phanatic, he did fall in love with Jurdie – the Mascot of Happiness.  I was simply blown away by this organization.  Huge smiles were on every kids’ faces along with non-stop laughter, dancing and happiness.  We made a personal connection with Derek the founder who was so sweet to my boys and made sure to make them feel comfortable and enjoy the day.

Mascots bring a joy to people like no other.  I never realized it before that day.  To then learn that they bring mascots to children’s hospitals all over to visit with the kids battling cancer was amazing.  It’s things like this that make patients and families forget you are in a hospital setting with your little one receiving chemo and other treatments.  It makes them forget any bad that they may be feeling and just smile and enjoy the moment.  That is priceless!

The new Twist for a Cure campaign is one we jumped into right away and had Max’s doctors and team of nurses and Child Life join in one day at a clinic appointment.  I hope it continues and they keep the momentum going spreading the word about pediatric cancer.  And I know that Max will always be a part of MFAC in one way or another.  Who knows… maybe he and his brother will create their own mascot one day and join in on the mission of ending this horrific disease and find a cure for these incredible kids.

Max and Family

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