Last month, 2014 Ambassador Grace had her final post-treatment MRI. Her mom, Bekah, shares the good news, along with some other milestones that have had them smiling this past summer.
Grace smiles with her parents, Bekah and Russell.
Grace’s MRI in August showed no evidence of disease. And now, eight years after diagnosis, the MRIs are done.
This is a huge medical milestone every cancer parent dreams of. It hasn’t completely sunk in.
Ambassador Grace finished treatment for a brain tumor seven years ago. Now, as she faces the late effects of her battle with a smile and her shining spirit, she is also helping other kids going through the same challenges through her fundraising efforts. Today we announce the Grace for Good St. Baldrick’s Supportive Care Grant, which is going to a research team using the latest technology and testing to find ways to help survivors like Grace.
Grace and her mom, Bekah.
2014 was a memorable year for St. Baldrick’s, with our volunteers raising over $4 million more than last year and funding a total of $27.2 million in research grants! As the year comes to a close, our 2014 Ambassadors reflect on the past year and how much YOU — the people who make the magic happen — mean to them.
Ambassador Grace’s oncologist was so important to their family that when they learned he was moving 1,800 miles away, they thought about moving with him. Grace’s mom, Rebekah, explains what this change means for them.
Grace and her pediatric oncologist, Dr. Doug Harrison.
She has declared repeatedly that her relationship with Dr. Doug Harrison is one of the few benefits of having been diagnosed with childhood cancer. He is kind and funny and supportive, and he talks directly to her. For my husband, Russell, and me, he is responsive and knowledgeable and willing to work as part of a team to offer her the very best care.
We met him on her first night in the hospital in September 2007. Our trip that morning to the neurologist to discuss Grace’s headaches had fast-tracked us to the ER for a CAT scan, a brain tumor diagnosis, and then upstairs to the ICU for steroids. Doug arrived with social worker Stephanie to introduce himself. I was eager for anyone to tell me what was going on and how to explain it to Grace.
Rebekah and her daughter, Grace, a childhood cancer survivor.
When the 46 Mommas formed in 2009, I vowed to shave until we passed our $1 million goal. We passed that goal in 2013 at our fourth annual event.
A month after that fourth shave, I gave birth to my third daughter, Esmae. As a mom of “advanced maternal age,” let me say, sleep deprivation hit harder this time around. Between the dark circles, all-things-postpartum, and — let’s be honest — the challenging hair growth stage, I wasn’t sure I had the energy or confidence for bald again.
And, of course, it matters greatly to me how my family feels about my shaving. Grace graduated to official “survivor” status this past year, so I was paying close attention to her cues. How would she feel about Mom being bald once more?
For brain tumor survivors like Ambassador Grace, who has been cancer free for over six years, the road to recovery is long and riddled with challenges. Her mom, Rebekah, four-time shavee℠ and member of the 46 Mommas Leadership Team, shares their latest dilemma.We’ve been researching middle schools for Grace, our 12-year-old medulloblastoma survivor.
We would like her to be in a place where her strengths can be challenged and her challenges supported. We would like classmates to be excited to see her each day. We would like her to be happy and to keep believing the sky’s the limit.
We know that’s a tall order for middle school.
Grace came into this world 14 weeks early and weighing only 2 pounds. After months of special medical care, her parents had hoped their hospitals days were over. Then, when she was 5, Grace began to experience intense headaches that were often followed by spells of vomiting. She was diagnosed with medulloblastoma just a few weeks into kindergarten. She underwent surgery to remove the brain tumor, followed by high-intensity proton beam radiation and nine months of chemotherapy.
Three months earlier, in September 2007, doctors were performing surgery to remove a four centimeter mass from my daughter’s brain. Medulloblastoma. She was 5. I had to remind myself to breathe.
By October, we were back and forth from Providence to Boston so that Grace could receive proton beam radiation at Massachusetts General Hospital. Grace had recovered well from surgery, and we took that as a good sign for the next phase of treatment. But then the radiologists surprised us with the news that Grace’s tumor had regrown faster than anyone expected. Her cancer was reclassified as high risk.
Rebekah with her daughter, Grace, after shaving with the 46 Mommas to raise money for pediatric oncology research. Grace was diagnosed with medulloblastoma when she was 5 years old.
Knocked up and bald.
That’ll be me this month when I shave as a 46 Momma for the fourth time.
Grace is thriving. She copes with the many complex side effects of the cancer treatment, some days better than others. Her newest therapy — daily hormone shots to (we hope) allow her to grow to a normal adult height without additional side effects — is the lowlight of her day.
Grace has been with me at each shave. She and her sister Fiona, 15, have been supportive of the shaving zaniness. They understand the need for awareness, the value of funding research for better treatments, and, of course, how cool a shaved head feels.
Lydia and Sophie, twin sisters, met my daughter Grace in nursery school when they were all 4 years old. The three girls discovered their mutual love of books and make-believe and became fast friends. Play dates are never often enough, but always elaborate, with their use of eve- changing pseudonyms.
Older Posts »