Cancer survivor Tobin Volberding, 9-year-old poster child for Carson Advocates for Cancer Care, is in remission following a 2-1/2 year struggle with medulloblastoma, a type of cancer originating at the base of the brain. Physicians check him every eight weeks and they are monitoring his condition closely.
"This kind of thing can flare up at any time, " said Advocate spokesman David Piel.
Since first diagnosed in April 1999, Tobin and his family have received financial and emotional support from the Advocates and Tobin's mother Alyce Volberding took time on Christmas Day to share her thoughts about the struggle in a letter to them.
She draws a bittersweet picture of both the triumphs and agonies and the following includes excerpts from that letter.
"Words cannot express the very deep emotions I have for you and all the Carson Advocate volunteers and staff. Your organization has been with us since the beginning of this horrendous ordeal," she said. "Throughout our whole ordeal we have been enriched by our family, a very supportive network of friends, church, family, our community and the CACC.
"I realize that returning to the innocent, pre-cancer days is unrealistic. Those days are gone forever, replaced by a 'new' normal. We now struggle daily with the side-effects of treatment, especially due to irradiation of the brain and surgery," she wrote. "I will never be the same and neither will Tobin. We will never be the innocent, blissful people we were before cancer.
"I have found out first-hand that the 'cure' to the cancer beast is a long series of trade-offs," she wrote. "All of us carry battle scars from cancer and its treatment."
Following that treatment, he battles daily with fine motor, gross motor, hearing loss, and learning problems, she said in a previous interview.
According to Piel, Tobin attends Dayton schools and the support he has received, from students, teachers and administrators has been overwhelming. But he has been bedridden for much of this ordeal and doesn't participate in organized sports.
In addition to the loss of physical strength, the feeling is that his nervous system would have a tough time dealing with the rough-and-tumble of contact sports and the therapies have created physiological and neurological damage that leads to depression in this otherwise cooperative and friendly child, according to Piel.
"He has to sit by and watch a lot," said Piel. "Some days, he's full of fun and other days it hits him harder."
But the battle is over for now and there are many bright spots. The Advocates buy Tobin a special gift each year at Christmas, a tradition that Piel seems to enjoy as much as the boy.
"The first year (1999) we bought him some Legos and he stayed up all night playing with them," Piel said. "Since then, we've given him remote control automobiles. He loves those."
Alyce Volberding celebrates the victories, but the memories of Tobin's childhood are often painful.
"I look back to our dear friend Katy (5 years old). Tobin and Katy became friends and one day we were all playing on Tobin's bed. Amidst the play of a Western village, Tobin and Katy had a funeral. Their make-believe cowboy had died from a failed bone marrow transplant," she wrote. "Two months later, Katy died from a failed bone marrow transplant .E A 6-year-old boy and a 5-year-old girl should not lose their playmate to a bad transplant.
"I don't know if it's a blessing that so much has left Tobin's memory, but I do know how hard it is on me," she said. "Yet, ultimately we have reached our goal. We are of the lucky few who have survived childhood cancer. Tobin is here with us and for that I am very grateful."
"As I reflect on our many blessings this Chritmas time, I am so thankful for Carson Advocates for Cancer Care and the love and support they have shown us," she said.
Founded in December 1992, Carson Advocates for Cancer Care is an all-volunteer, nonprofit organization dedicated to providing financial and related services to cancer victims and their families in all of Nevada's rural counties. Advocates are supported by volunteer contributions and services and almost every penny of the fund-raising, gift and grant income is paid out for care, treatment and prescription medicines for the 55 patients it serves statewide.
WHAT: Winter Wine and All That Jazz
WHEN: 7-10 p.m. Jan. 12
WHERE: Carson Nugget ballroom
WHO: Fund-raiser for Carson Advocates for Cancer Care