Pediatric Cancer, Warrior Of The Week

Cancer Warrior, Ella Ryan

Fourth and Gold highlights a cancer warrior that has bravely and fiercely stood strong against childhood cancer. At Fourth and Gold, we want you to see the faces behind our drive and connect with them in a way you wouldn’t have been able to if you didn’t take the stand to demand #MoreThan4. These Fourth and Gold warriors have cancer, but cancer does not have them.

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Ella Ryan, aka “Ellski”, diagnosed with B-Cell Acute Lymphoblastic Leukemia (ALL) at 2 years old

Current Age: 3 (DOB 2/28/16)

Favorite things: Sweet little Ella loves her fix of Doc McStuffins, Five Little Monkeys, Pete the Cat and Polar Express

Favorite foods: Ella is most of us in a 3 year old body- she loves pizza and chocolate chip cookies!

Typical day looks like: Ella wakes up at 7 and go to the babysitter’s house (on weekdays) where she plays until about 3:30. She then meets with occupational, physical and/or speech therapy every day for 30 minutes (totaling 6 therapy sessions a week; 2x for each therapy). Ella is determined to get stronger everyday so she loves therapy time. Prior to therapy, Ella wasn’t able to climb stairs or speak in sentences. Now her family is kept busy running after her and enjoying small conversations with her.  After workin hard at therapy, Ella is rewarded with some of her favorite things- Doc McStuffins or 5 little monkeys on TV. After downtime, Ella eats dinner and then enjoys playtime with her two sisters (Ella is the middle child- Reagan 5, and Taylor, 1).  Medicine time consists of a nightly liquid chemo and on the weekend she also receives Bactrim for PCP prophylaxis.  Every Monday Ella gets 4 chemo pills (crushed & mixed with liquid) and she also receives steroids 2x/day for 5 days once a month.  Throughout the night, Ella receives NG tube feedings in order to keep her weight up.  On Saturday mornings, Ella goes to a “parent led” gymnastics class where she is learning to take turns, transition to different activities, and basically share space with other kids while doing fun obstacles that help her strength and coordination.  Ella’s parents Ashley and Mike are thrilled that Ella is transitioning into a normal routine of a 3 year old again.

If you know Ella you know that she: is very spunky, knows what she wants, and advocates for herself (Go Ella!).  She’ll frequently tell you “no” if she’s not amused by your ideas, but she is also the sweetest little girl who asks to “cuddle” several times a day.

What you cannot see here is that Ella has endured:

  • -Countless blood and platelet transfusions (Donate blood!)
  • 2 major surgeries- the first was when her port was placed; the second was when she has a PICC line installed in her arm
  • Ella was hospitalized for 1 month (Oct 17th- Nov 12th 2018) for treatment for VOD (veno-occlusive disease)* Ella qualified for a life saving medication, Defibrotide, that saved her life
  • She receives spinal taps monthly now, requiring being put under anesthesia each time
  • During the consolidation phase, Ella received weekly spinal taps.
  • Countless clinic appointments, blood draws and pokes to access her port
  • Ella broke her foot last September (accident in a recliner chair)- and had to be in a cast for 3 weeks.

Ella’s mom, Ashley, on the hardest part about having a child with cancer: “The hardest part is watching your child go through something scary and painful and not being able to fix it for them and take the pain away.   Every day there are battles and victories and our lives will truly never be the same.” 

One thing you wish people knew about childhood cancer: “It is not just something that comes and goes out of your life once your child is in remission or is cured.  You always live with the worry that something could go wrong, that the rug can be pulled out from under you again. We will worry about her cancer for the rest of her life; this is something we will always live with. On a different note, during the 8 month long consolidation phase of treatment, Ella had some very hard days.  There were days when she wouldn’t move off the couch and didn’t speak.  At times she was almost incoherent. Our world felt like it was stopped, frozen, during those hard moments, watching her be in such pain.  But the world around us kept going on, and that was hard.  As a human being you are still expected to pay bills, show up to work, complete certain tasks, be there for others, etc., when really all that was on our minds was getting our child healthy again.  After the initial shock of her diagnosis wore off, some people forgot that we were still fighting (and she will be fighting until she finishes treatment in July 2020).  It is hard because as much as you want to be treated like a normal member of society, you do not feel normal inside and you want everyone around you to be aware of that. ”

How has childhood cancer impacted your lives the most: We have truly seen the beauty in the world.  We have been blessed by many people in our lives who have done kind and generous acts, all for the purpose of making our lives better and taking our pain away.  It has made us pay it forward and help others the way people have helped us during this tough time. Further, we are constantly reminded of the beauty of our children, our family, and take no moment for granted. A smile, a laugh, a joke, a hug, a normal moment between 3 sisters, we watch in awe and just thank God that Ella was given this second chance at life.  We look forward to Ella’s future, and to our future as a family, and know that we will all live with purpose and love.  On a more personal note too, it has given me the confidence to conquer anything that life throws my way.  Nothing really gets me too riled up anymore. I used to spend time worrying, analyzing little, unimportant things, and I have learned that those things just don’t matter.  Nothing seems like a big deal to me, except for the health and well being of my family.  I feel like the most chaotic situations do not stress me out, and I am more easy going (most days:) because of all I have dealt with this past year.* *I was 37 1/2 weeks pregnant when Ella was diagnosed in March 2018.  I had a baby 3 weeks after her diagnosis on April 1st, 2018.  It was a crazy, busy year, so that is what I mean by “chaotic.”  I really feel like I can handle anything, and it makes me feel good about myself and where I have been, how far I have come”

Social Media Page: Ella Rae Ryan’s Hope Fight Cure Journey

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Learning about sweet Ellski and her journey has been such an eye opener for me. Often times, we see kids get their initial diagnosis, start treatment and when we see they’re doing “well”, we seem to let off the gas in awareness. Why is that? We must not get complacent in our desire to raise awareness, no matter what each child’s battle looks like.

Ella’s journey is unique to her and her family, but it is far from rare, like the government wants us to think. 43 kids get diagnosed with cancer daily and 1 in 5 will not survive 5 years. Fortunately, Ella is working her way back to find herself living a typical 3 year old life, but is giving your child chemotherapy really normal? It’s Ashley and Mike’s new normal and they’re thankful where Ella is at, but I don’t want any of us to ever get used to parents administering chemotherapy to their once thriving 2 year old as normal.

Ella’s mom, Ashley, gave us real, raw and transparent answers to our questions and it’s really made me think hard. Some of the trivial stuff we get caught up in really doesn’t matter, does it? The thing that matters most in this world is family and love and I’m thankful that the Ryan’s have shared their journey with us and yet again, left us walking away with new lessons learned, inspiration and a desire to do more.

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We introduce you to warriors like Ella because we want you to understand that unlike adult cancers who receive 96% of all research funding, childhood cancer research receives a measly 3.8%. WHY? Because it is considered “RARE”, yet 43 children per day or 15,780 children per year are expected to be diagnosed with cancer and since 1980, fewer than 10 drugs have been developed for use in children with cancer (National Pediatric Cancer Foundation)

We’d love for you to help us close this gap between pharmaceutical companies and childhood cancer research by considering making monthly donations to the non-profit childhood cancer research foundations below:

Cure Childhood Cancer

St. Baldricks Foundation

Pediatric Brain Tumor Foundation

Alex’s Lemonade Stand

Beat NB

Want to do your part, but look good while doing it? These companies give to childhood cancer research based off a percentage of their profit: 

Fourth and Gold -> Donates 100% of profit in September, 50% all other months and donates a warrior shirt to a child with cancer with every purchase made 

Love Your Melon -> Donates 50% of profit and donates a LYM beanie to a child with cancer with every beanie sold 

Head Bands of Hope -> Donates 10% of profit and donates a headband to a child with cancer with every headband sold

We encourage you on behalf of Ella and the 42 other children who will get diagnosed with cancer today, that you help us close the funding gap and donate to childhood cancer research. Awareness, funding and dedication to changing the research world of childhood cancer is severely lacking. It takes a village…. please join ours.

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*VOD: “Veno-Occlusive disease (VOD) is an uncommon, but serious liver problem. In VOD, the blood vessels that transport blood through the liver become inflamed and blocked. This causes the liver to swell. Because of the lack of blood supply, the liver cannot remove toxins, drugs and other waste products from the blood, which is one of the liver’s essential functions. Eventually, fluids build up inside the liver, making it more tender. The kidneys may keep excess water and salt, causing the arms, legs and abdomen to swell” (About Kids Health)

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