The day I heard the words, “Cole has cancer” my family’s life changed forever.
After a couple days of wondering and hoping it was all a terrible nightmare, realization set in and I knew I had to be strong…strong for my family and especially strong for Cole. At only six-years-old I couldn’t let Cole see the state of inconceivable fear that became our family’s reality on April 5, 2005.
In the days following Cole’s brain tumor diagnosis our life was completely turned upside down. Our number one priority became caring for Cole and beginning his treatment. Our normal routine of work, shuttling the boys to school and sports, grocery shopping, and day-to-day family life changed overnight.
Early in his treatment our social worker at Lucille Packard took Cole out of the room so the medical team could discuss the treatment plan with us. After the treatment discussion, Cole entered the room and announced he wanted to name his tumor Blobby. From that day forward we turned Cole’s cancer treatment into a game, with the game’s goal of killing Blobby.
Cole and I practically lived at the hospital for the first few weeks after diagnosis, commuting back and forth to LPCH sometimes daily for almost a year. His treatment began with four rounds of chemotherapy followed by 30 days of brain and spinal radiation. After his first two rounds of chemotherapy, an MRI revealed his tumor was growing…it wasn’t responding to the chemotherapy treatment. This news was even more shocking than the day we received his diagnosis. Our hopes were shattered!
Cole’s treatment regimen changed immediately to daily radiation, which proved hard for Cole because it required him to lie completely still for a long time with his head in an immobilization mask. On the 19th day of radiation therapy he woke up in the middle of the night with a horrible headache and began vomiting profusely. We rushed him to the hospital where we received even more devastating news; Cole’s brain tumor was still growing. Our only option was to attempt a very risky surgery to remove a tumor we were told originally was inoperable.
The fear we felt made it hard to hold it together. His medical team wasn’t certain he’d survive the surgery, and if he did, he may not be able to walk or talk. They told us they were certain they wouldn’t be able to remove the entire tumor. Surgery would relieve the pressure that Blobby, now the size of a small orange, was creating in his small little head.
Questioning whether to put him through such a risky surgery and left with no other options, we chose to proceed. The next day, we watched our precious boy (now 7) go though the surgical ward doors and we wondered if we would ever see him again. All we could do was pray.
After over eight agonizing hours of surgery, his surgeon shared the unbelievable. Cole had survived the surgery and they had successfully removed the entire tumor. While Cole needed more chemotherapy and radiation to ensure there were no remaining cancer cells, Blobby was gone! Cole and his amazing medical team had successfully killed Blobby!
Great love from Jacob’s Heart
Not all stories end like Cole’s, and unfortunately miracles don’t always happen.
Cole is a survivor but the scars of cancer treatment are still with him. After healing from surgery, he endured another six months of treatment leaving him weak and unable to attend school for over 18 months. He struggled to find his place among his peers and lacked the strength and energy to do the normal things boys do. The radiation treatments have had long-term effects on his cognitive functioning and his hair will never fully grow back. And Cole’s siblings couldn’t completely comprehend why our lives had changed so drastically…they felt abandoned and sometimes overlooked.
Dealing with the uncertainties of the tumor coming back and wondering what effect the trauma of such aggressive treatment would have on him consumed me. Would he find a network of friends? Would he lead an independent life? Would he get married and have children? I should have been relieved that my precious boy survived, but instead I was consumed with severe post-traumatic stress.
Through all of this, Jacob’s Heart was the support that helped our family heal. Cole began his recovery by connecting with friends at Art from the Heart where he felt loved and supported. As he matured into his teens, he joined other teens like him at Teen Group, led by Mariela Medina (also a childhood cancer survivor).
Now 21-years old, Cole attends college. To this day Jacob’s Heart is his refuge of hope and encouragement. Cole volunteers his time and artistic skills, and one day he hopes to work with other children who’re challenged with life threatening diseases. Cole has a sense of confidence and belonging that may not have happened without the loving support he received at Jacob’s Heart.
What’s my why?
Jacob’s Heart provides amazing love and support to families…just like mine.
While at the hospital, we met many families from different socioeconomic conditions and their lack of community was evident. Oftentimes, there was only one parent present, they never had friends or family visit, and you could see the sense of isolation, fear and uncertainty in their eyes.
I’m on the Jacob’s Heart Board of Directors to make sure—as long as there is childhood cancer—Jacob’s Heart is there to serve in two important ways (both incredibly personal to my family’s experience):
- To provide mental, physical, and financial support to families so they can remain strong and by their child’s bedside;
- To emotionally support children, siblings and parents with the post-traumatic stress that follows the diagnosis and treatment of pediatric cancer.
Where I Serve:
- Camp Heart & Hands Planning Committee
This free summer camp experience for families of children with cancer, under the beautiful Santa Cruz mountain redwoods, puts cancer in the backseat and lets kids be kids for the weekend.
- The Jordan & Kyra Foundation – Co-Chair
The Jordan and Kyra Memorial Golf Tournament, in memory of Jordan Stuart and Kyra Pillsbury, provides funding for Jacob’s Heart, Family House, and cutting-edge cancer research at Dartmough-Hitchcock’s Norris Cancer Center.
- Fundraising Development – Monterey County
The need is great in Monterey County— Jacob’s Heart supports a much greater number of families in this county than the other three counties we serve.