Pediatric Cancer, Warrior Of The Week

Cancer Warrior, Julia Adams

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.

————————————————————————————————————————–

Julia Caoilainn Adams, aka Goof Goof diagnosed with Clival Chordoma* at  22 Months of age

Current Age: 2 (DOB 12/2/16)

Events leading up to her diagnosis, as told by Julia’s mom, Amy: “Persistent stiff neck that was painful to readjust – she appeared to be ‘stuck’ looking slightly up; she would not tilt it down. This (in hindsight) progressed over roughly 2 months. 3-4 months prior she behaved totally normal physically. So we took her to the ER inquiring about the stiff neck, thinking she may have broke or pulled something. In hindsight, we see she lost weight, became more fussy, refused to eat, slept a lot, and sweat a lot.”

Favorite things Julia likes to do/play with/watch: Julia LOVES LOVES LOVES Peppa Pig!She also enjoys watching Paw Patrol and Bubble Guppies =). Although Julia’s fine motor skills are limited right now, she enjoys coloring and playing on her iPad (aka randomly switching channels)

Favorite foods: Currently unable to eat, but before admission 100% Peppermint Patties were her favorite thing!

Typical day looks like: She’s bed-ridden right now (still in recovery from major spine surgery), so… throughout the day she sees a few therapies at her bedside (PT, OT, speech, and music), she spends a lot of time watching TV, plays on her iPad, colors, NAPS!, wiggles around to dance with her daddy, and once in a while she’s able to make it out of her bed and go for a short stroller right =) . We absolutely love seeing the progress that Julia has made.

If you know Julia you know that she: LOVES Peppa Pig and doesn’t go ANYWHERE without her Tiger <3 (seriously, she even sleeps with it on her face! 😉 )

  • What you cannot see here, is that Julia has undergone:
  • Surgery to place her chest port
  • Surgery to remove the initial tumor (went through the back of her throat)
  • Follow-up spinal fusion surgery to fuse C4 skull
  • 2 Skin Grafts
  • Major brain infection
  • Stroke
  • External shunt surgery to relieve pressure
  • G-tube feeding tube placed
  • External shunt removal/internal shunt placed
  • Tracheostomy
  • Countless blood transfusions
  • G-tube readjustment
  • 6 rounds of chemo
  • Julia has been inpatient at the hospital since October 2018

Julia’s mom, Amy, on the hardest part about having a child with cancer: “Waiting for her to die. Since she was officially put on hospice and treatment stopped… that’s what happened. We planned her funeral. We had ‘final’ pictures taken. We took her hand prints, and hand molds. We watched her vitals get worse and worse as the cancer squeezed her brain stem. At that time, we knew we’d never talk to her again, never see her smile again, never have her squeeze our hand again. It was a living nightmare. Somehow… through perseverance or prayer or luck… she is fighting this and improving. Living with a child with cancer is awful, but honestly, compared to those few weeks on hospice, every day with her is WONDERFIL! So our perspective has totally changed =) We’re just so thankful she’s here!”

One thing you wish people knew about childhood cancer: “It can happen to anyone, even in a “perfectly healthy, normal, smart, beautiful” child. Out of nowhere. You can see your child dancing around one day and be told they’re dying the next. I am SHOCKED to find out how common it is! And I’m horrified to know how little funding they get.”

How has childhood cancer impacted your lives the most: “It has opened our eyes to the fact that life is not fair or just by any means. The most awful diseases can impact the most innocent people. And you get very little say in what happens after that. But it has also taught us to love a whole lot more, and live in the moment, and to stop waiting for “the next cool thing” they can do – love them now.”

Social Media Page: Amy Largent

——————————————————————————————————————————

As we wrap of brain tumor awareness month, I sit here in awe of all of the uncertainty, pain, fear and anguish Julia and her family have gone through since October 2018. They walked into the hospital with a presumably healthy baby girl, and still haven’t walked out- 7 months later. They were told Julia had days left to live in January, forced to “watch her die”, and by the Grace of God, that has not happened. I’ve followed Julia’s story since January. I’ve waited on edge for updates provided by Julia’s mom, Amy. I’ve prayed for her, been angry for her and down right cried for the life that Julia deserves to live. It’s not mentioned in the interview, but Amy was contacted by a family from New Zealand who had a child go through a similar experience who was now doing well. The family gave the Adams their game plan and Julia has now been going through the same treatment that saved another child’s life.

Because childhood cancer research only gets 4% of all research funding (brain tumors get<1% of that!), Julia’s protocol is unknown. There is not enough research out there to determine how many rounds of chemo she needs, what the life expectancy is, will she walk out of this like that child in New Zealand? We just don’t know.

Less than 4% of NIH/NCI’s budget is directed at childhood cancer research with a miniscule fraction of these funds being utilized for targeted children’s brain tumor research. In fact, only 2 new treatments for brain tumors have been approved in the past 25 years! (PLGA Foundation). The cure rate for brain tumors is significantly lower than that for other types of childhood cancer. Childhood cancer is considered “RARE”, yet 43 children per day or 15,780 children per year are expected to be diagnosed with cancer. Here’s where Fourth and Gold comes in and I hope all of you, as well.

Treatments for children with cancer are limited and can be very devastating. Many parents will tell you that the treatment is so harsh and so outdated that it has or almost has killed their child. 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 research foundations below:

Cure Childhood Cancer

Beat NB

Pediatric Brain Tumor Foundation

St. Baldrick’s Foundation

Alex’s Lemonade Stand Foundation

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

Five Below -> Donates regularly to Alex’s Lemonade Stand Foundation

To help Julia and her family directly:

Meal Train

GoFundMe

On behalf of precious Julia and 42 other kids who will get diagnosed with cancer today, please help us in the uphill battle that is childhood cancer. Awareness, funding and dedication to changing the research world of childhood cancer is severely lacking. Don’t wait until it’s someone you know. It takes a village… please join ours and #GoGrayInMay!

——————————————————————————————-

*Clival chordomas are locally invasive tumors that arise in the base of the skull.

Advertisements

3 thoughts on “Cancer Warrior, Julia Adams”

  1. What an awesome article about little Julia Adams!! I too have been following her progress since January and I have laughed, cried, cheered and prayed with this family!! As a mother of 2, I cannot imagine what Reed and Amy are going through on a daily basis!!! It does take a village!! Both of my boys have medical issues but I thank the good Lord above that cancer is one beast we have not had to face and I pray to Him every day that we never do!!
    Thank you for bringing children’s cancer care to the limelight. I cannot fathom why the most vulnerable of our population gets so little attention when it comes research!! This really needs to change!!

  2. Amy and Reed Largent are the parent warriors fighting and living everyday for their beautiful daughter. I began to follow them when Amy mentioned that the authority for this rare form of cancer was at Massachusetts General, the very hospital where my son is in training to become a warrior pancreatic cancer surgeon. Reed has only left Julia’s side for a couple of hours over the last 7 months. Amy articulate’s her baby’s journey with dignity and grace. I have witnessed this heinous disease firsthand as a childlife volunteer. More needs to be done. Too many parents are losing their beloved children, living every parents worst nightmare. I pray for the medical staff navigating a very slippery treatment slope. They need our support and prayers every single day. I pray for the families in the fight and for God to hold their children and ease their fear and pain. I pray for their siblings, they are not forsaken. Hope can not be extinguished. Thank you for highlighting Miss Julia. She is a living breathing adorable child. Life for Julia.❤

Leave a Reply to Kelli Hart Brenneke Cancel reply