Our precious 16-year-old daughter Carolyn has a very rare, devastating and aggressive cancer called Adrenocortical Carcinoma (ACC). She was diagnosed in January 2019 after waking up in the morning with a sharp pain in her right abdomen. Thinking this could be appendicitis, my husband Tim took her to the Alberta Children’s Hospital. My heart sank when Tim told me doctors found a 13-centimeter mass and that I should leave work and come to the hospital immediately. By that evening, we were advised that Carolyn had an extremely rare form of cancer, that was malignant and very aggressive. This is news that no parent should ever hear and no child should have to ever be told; this news shattered our hearts and devastated her little brother.
[Nov 26]- please see recent updates. We are still battling for Carolyn's life, surgery was amazingly successful in August but sadly weeks later her cancer recurred in her liver. We now have her on new medications recommended by the Mayo Clinic and MD Anderson while we work with ACC experts to understand her surgical options. Donations following this surgery will be set aside for future treatments, medications, and financial support as needed for our family. Thank you for your prayers and support during this incredibly difficult time.
What we know today:
1. The tumor must be removed for Carolyn to survive.
2. We need financial help in sending Carolyn to an experienced surgical center in the United States that specializes in ACC removal.
3. Time is not on our side.
Carolyn’s ACC journey
Once diagnosed, Carolyn quickly started chemotherapy, unfortunately we were told she is no longer responding to that treatment. On May 22 2019, doctors attempted surgery to remove the tumor, but the surgery was aborted due to massive blood loss. Twenty-four hours later, Carolyn went back into surgery to remove the surgical packing and close her up, leaving the tumor behind. While on life support Carolyn awoke in the middle of the night, unable to speak, she signaled to her dad her desire to write something; the nurses provided a small white board and Carolyn slowly wrote: “Was it good?” Breaking down in tears, my husband had the torturous task of giving her the bad news: it wasn’t good, and the tumor was still inside her. Our brave little girl wrote back “Don’t worry dad it will be better next time!”
We subsequently learned or have come to realize:
1. Based on a St. Jude’s Children’s Research Hospital consult with their ACC expert and our oncologist, the only cure for ACC is complete tumor removal by an experienced surgical team, which is outside the realm of general surgical practices.
2. Surgical removal by a surgeon experienced in the resection of malignant adrenal tumors is of the utmost importance to assure optimal outcome. Our surgical team at the Alberta Children’s Hospital have never dealt with ACC removal.
3. The University of Michigan Health Systems, has a multidisciplinary endocrine oncology program, mainly caring for patients with ACC and has treated over a 1000 patients.
4. Our St. Jude’s ACC expert confirmed that no center comes close to the experience at the University of Michigan Health Systems.
5. Because of the limited experience in ACC treatment in Canada, we felt our only hope was to get Carolyn to the University of Michigan Health Systems, the highest specialized ACC center in the US.
· [Update from June 15]: Dr. Hammer and his team at Michigan reviewed Carolyn’s case but unfortunately US law prohibits their ACC surgical team from treating a minor. Their pediatric surgical team does not have the level of experience with ACC needed. This supports another expert opinion that ACC tumor removal is outside the realm of general surgical practices. Due to this new learning we have decided to engage with the Mayo Clinic as a leader in pediatric surgery and are now working with Dr. Christopher Moir, Pediatric Surgery in Rochester, Minnesota. They have experience with Adrenal Cancer and extremely complex surgeries such as conjoined twins.
6. Due to the rarity of ACC there is limited funding for clinical trials leaving ACC patients at a disadvantage for progressive treatments; treatments need to be individually funded. Statistics support that there are only an estimated 3 pediatric cases of ACC diagnosed in Canada per year.
7. Our family had to make significant adjustments in order to care for our daughter; we are currently getting by on one income, my husband had to leave his job 5 months ago to provide necessary care for Carolyn. Most importantly, we’re not financially able to fund Carolyn’s lifesaving surgery and the associated support costs on our own.
8. The only hope for our daughter to survive is to get her to an expert pediatric surgical team as soon as possible and we are running out of precious time.
· [Update from June 15]: During out consult with Dr. Hammer he had a lot of valuable information to share that we have passed onto our Oncologist at the Alberta Children’s Hospital to support her care while we await a plan for surgery. Although we were told she is no longer responding to chemo the results show that she did have some benefit and that Dr. Hammer recommends we continue with two more rounds of chemo to give her the most possible benefit prior to another surgery. He said any response is “winning the war”. While we await the plan for surgery our oncologist will be following Dr. Hammer’s recommendations.
9. We currently do not know how much funding is needed, and are working with our oncologist and the Mayo Clinic to determine the costs and process for getting Carolyn there.
10. If we don't raise enough money for this specialized surgery Carolyn may die!
The strength and courage Carolyn has shown us through this experience is incredible, witnessing her fight gives us strength and courage every day. Our daughter has been so sick, she’s endured chemo only to be told it was unsuccessful, she vomits constantly, she's lost her hair, she hasn’t been able to attend school, and she’s been largely isolated out of necessity due to her severely compromised immune system. She is just starting to recover from her surgeries, and still, she’s charging forward with a positive attitude. She constantly inspires us to keep fighting for her when few options are available to win this fight. This is the reason we’re desperately reaching out to strangers to help us in our darkest time.
We’ve registered with St. Jude’s Children’s Research Hospital in the US as part of their research program, giving them our permission to use Carolyn’s tumor and case for research. Of one thing we are certain, if Carolyn receives this treatment and it works, it won't be just Carolyn’s life that will be saved, it may pave the way for many more children in the future who are suffering with this horrible disease. Carolyn’s fight will provide awareness and education that can lead to better treatment strategies for others in Canada.
We’re a very private family, we’ve never asked for help, but we know we can’t be successful without your donation. Our daughter means everything to us and her little brother and we simply can’t do this on our own.
Please help us save our daughter Carolyn! Give Carolyn a chance to live her life and share her creative talents with the world!
#carolynsfight #carolynsarmy #raredisease #whatif #saveachild #koolyncos #adrenalcancer #ACC
For more information on ACC with Dr Gary Hammer from University of Michigan see the following:
Video: Fighting Adrenal Cancer with everything we've got
About Dr. Hammer
TED Talk by Dr Gary Hammer
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