Posted: October 29, 2014
4 Years Old at Diagnosis
Friday, July 9, 2010 started out like any other day for the Carvers, a Utah family of four – mom Chelsea, dad Pat, and their children Cami and Caden.
The children woke up and watched cartoons while Pat got ready for work. Then it was off to Costco for Chelsea and Caden, while Cami had a play-date at a neighbor’s. When Chelsea picked Cami up, her neighbor mentioned that Cami was not acting like herself and had a slight limp. Chelsea recalled that Cami had complained of hip pain for the past week, but had chalked it up to horseback riding at a birthday party several weeks earlier. When Chelsea noticed that Cami was not herself, she became alarmed and called Cami’s pediatrician, Randy Reese, MD.
An appointment was available that afternoon, and while a physical exam did not reveal anything, the doctor ordered blood work and indicated the results would be in on Monday.
At 11:30 that evening, the Carvers received a call from the pediatrician. He directed them to immediately take Cami to Primary Children’s Hospital. “My heart sank,” recalls Chelsea. “I knew he would never call that late, and have me wake her if it wasn’t serious.”
Just two and a half hours later, after a series of tests, IVs, waiting, wondering, and crying, the Carvers learned that their little girl, months shy of her 5th birthday, had cancer.
Within the next 12 hours, Cami underwent a port placement, 3 blood transfusions, and chemotherapy. In the morning they met Anupam Verma, MD, one of Cami’s oncologists, who gave them her official diagnosis: acute lymphoblastic leukemia (ALL) B-cell. This liquid tumor, or cancer of the blood, starts in the bone marrow and spreads through the bloodstream. It is the most common children’s cancer, accounting for more than 2,900 cases in children each year. Unlike other types of children’s cancer, ALL has an 80-90% survival rate.
For the Carvers, life as they knew it changed dramatically. For the next 6 months, Cami endured weekly IV chemotherapy, monthly spinal taps of injection chemotherapy, hair loss, and a month-long steroid induction that caused Cami to triple her body weight.
Walking was almost impossible. All she could do was lie in bed and eat. The steroids made her extremely grumpy and sensitive, and caused intense cravings. She was “a totally different child within a month” described Chelsea. When able to get out of bed, Cami would sit and cry as she watched her friends play outside her window. The Carver’s 18-month old son was not allowed to go anywhere for fear that he would bring back germs that could be detrimental to Cami’s health. Visitors were kept to a minimum. Only close family who were screened for good health could visit. Cami’s grandmother moved in to help out in any way possible. “My marriage would not have worked, had it not been for my mother” says Chelsea. Pat missed a lot of work and when he did make it to work, he would come home and immediately shower so as not to infect Cami with any germs from the “outside world.”
Just a year later, Cami is in the maintenance phase of her treatment. Life is easier for Cami and the Carvers. Her daily chemotherapy is in pill-form in the privacy of her own home, she undergoes monthly pulse steroid treatment, where large doses of steroids are given over a 5-day period, her spinal taps have been reduced to every 3 months and her hair is growing back.
Cami is now 6-years old and in kindergarten. She has a pretty normal school life, other than missing class once a month for IV chemotherapy and steroids that cause her to become very sick, a flu outbreak, or if any students have recently been immunized. She cherishes the time when she does attend school.
Despite the unfortunate obstacles this brave little girl has battled in her short life, she is optimistic through it all. Cami refers to her blood transfusions as being “like a rainbow” and says the blood pressure cuff “is just giving [her] an arm hug.” Cami loves to dance, sing, perform for others, play with her now 3-year old brother, and is very proud to not need her training wheels anymore.
This year, the family was proud to spend the one year anniversary of Cami’s diagnosis at the CureSearch Walk – Salt Lake City. Chelsea was a member of the Walk committee, and their team Cami’s Cure Crew, raised more than $6,000 and was the 3rd highest fundraiser. Their success was due in part to Pat’s brother donating 100% of the proceeds from one week of his restaurant, Tony Burgers. All told, the first ever CureSearch Walk – Salt Lake City raised $72,000 and had more than 1400 walkers.
The Carvers have used Cami’s cancer experience as a way to count their blessings, remember happy moments, and the hard things that have taught them lifelong lessons. They are adamant about spreading the word so that there is hope for other children with cancer and look forward to participating in the CureSearch Walk again next year.