Aside from the daily injections and blood tests twice a week Carly is doing good. She has even gone back to school this week. However she wasn’t feeling well enough to go today. All her blood counts are fine but are still dropping. I suspect that she will probably be neutropenic by this weekend.
We received a phone call from one of the technicians at the MGH proton beam facility. They feel that because Carly did so well during the process of making her mold that she will not require sedatives. This is good news because we were expecting that she would have to be sedated before each procedure. These daily treatments will begin during the week of her next chemotherapy cycle.
Carly’s school will be holding a yard sale tomorrow and her teachers are going to be setting up a bake table in her name. I just hope it clears up for the event. Other than that she seems to be doing well. You can tell she is happy to be home and playing with her big sister. Kelcie is also happy to have us all home again.
At the beginning of this month Gloria LaBounty, a reporter from the local paper, came by to do a story on Carly and on the long-term effects of cancer and cancer treatment. The Sun Chronicle and Gloria have graciously allowed me to post the article on Carly’s page.
BY GLORIA LaBOUNTY
SUN CHRONICLE STAFF
ATTLEBORO - The glisten in Carly Laverty’s azure eyes speaks of swings and slides and Barbie dolls, the stuff that makes up a four-year-old’s life.
With her very best friend, six-year-old sister Kelcie, she dons gowns and tiaras to enter a land of fairy tales that only little girls can know.
Now that sparkle in Carly’s eye has been dulled by cancer and surgery and chemotherapy, and the prospect of radiation.
It’s the kind of reality that the Laverty family has had to face ever since their first trip to Children’s Hospital in June to find out the cause of Carly’s severe leg pain.
Doctors were baffled at first, then ordered a range of tests and scans that finally pinpointed the cause - a mass on Carly’s spine.
The tumor appeared to be benign, and was removed by a neurosurgeon who was confident she had gotten it all. But on July 2, Carly’s parents learned that the lab report showed the tumor was cancerous, and the cancer was an extremely rare and very aggressive form.
"Our whole world crashed in around us," said Carly’s mother Henni. ‘‘Getting the news that it was cancer was scary enough without finding out it was so rare.’’
She and her husband Roy had to make a choice — either take their chances that the cancer had been completely removed and would not return, or take extra precautions with a regimen of chemotherapy and radiation that would battle any undetected remnants of cancer, but that could cause a host of new problems for Carly.
On their doctors’ advice, they opted for treatment, and the hope for remission even though they know their chances with this bone cancer known as mesenchymal chondrosarcoma are only 20 to 30 percent. Even if Carly is cured, they wonder what else is ahead for their daughter as her body grows and develops and changes amidst the long-term effects of treatment.
‘‘Once a cancer patient, always a cancer patient,’’ said Roy Laverty. ‘‘Being in remission does not mean you do not deal with it again. She will live with this for the rest of her life.’’
So today, as they go to Dana Farber Cancer Institute for the fourth of Carly’s nine rounds of chemotherapy and anticipate a future regimen of radiation, they know those drugs and rays going through her body can destroy healthy cells along with the cancerous ones. They read the sheets of information from doctors that tell them of the short-term effects like hair loss, nausea and vomiting, weakness and numbness, and the possible long-term impacts on her hormones, her heart and lungs, and her blood cells that can decrease her ability to fight infection. They also know of the risk of a secondary cancer developing later in life, like leukemia.
‘‘This will be in her forever,’’ Henni Laverty said. ‘‘My question is, when do they consider her okay? When is she free and clear?’’
It’s a question that more and more parents are asking as treatment for childhood cancers improves.
According to the National Childhood Cancer Foundation, up to 70 percent of all children with cancer can now be cured, and those with leukemia can be cured more than 80 percent of the time. The cancer death rate had dropped more dramatically for children than for any other age group, the foundation says, yet more than 11,000 young people are diagnosed with cancer each year.
That means a growing population is developing of cancer survivors who were treated as children and who now, as adults, must deal with the aftermath.
That issue is the reason for the existence of the David B. Perini Jr. Quality of Life Clinic for childhood cancer survivors at Dana Farber. Dr. Lisa Diller, medical director of the clinic, said with cure rates on the rise, more attention is now being directed to the later effects of therapy. For instance, chemotherapy can impact kidney and heart functions, she said, while radiation can affect hormones and interrupt normal growth patterns, and even cause other types of cancers. In addition, blood transfusions can put the patient at risk of blood-born illnesses, and bone marrow transplants can raise issues involving the immune system.
A number of emotional problems can also come into play, Dr. Diller said, like depression, anxiety, poor self-image, and even post traumatic stress disorder.
At the Perini clinic, young cancer survivors and their families meet with medical specialists who monitor the long-term medical, social and psychological impacts. The clinic also offers workshops, support groups and other programs, and conducts research to better understand the effects of certain cancer treatments.
Dr. Diller said survivors who turn to the clinic are initially seen more frequently because of the potential for side effects from treatment, and are eventually seen once a year, a regimen that continues for life. That kind of monitoring is particularly important with pediatric patients, she said, because different issues arise as a young person goes through puberty, then deals with adulthood and issues like fertility. Survivors do return to the care of their pediatricians or primary care physicians, she said, while maintaining contact with the clinic.
Established 10 years ago in memory of a young cancer patient, the clinic is growing, Dr. Diller said. At first, it was serving one or two survivors a month, she said, but now it handles 10 a week.
It’s the kind of long-term care that Henni and Roy Laverty anticipate needing as they take their daughter for another round of chemotherapy, knowing these drugs are entering her system just as she is in the midst of growth. What adds to their concern is the lack of information about her particular form of cancer, which has struck only 80 people across the country.
In his search on the Internet for information, Roy Laverty came across a Web site about a boy in Connecticut who had the same form of cancer. The families have since been in contact, and now Carly has a link on the site, www.touchofhope.org, the organization the Connecticut father established. The site is helping the Laverty family keep relatives and friends informed of Carly’s condition, and is making information available about the illness.
The Laverty family is also supporting the effort of the National Childhood Cancer Foundation to get a postage stamp on childhood cancer awareness approved by the U.S. Postal Service.
Meanwhile, people are supporting them. Although Roy Laverty’s medical insurance is covering the costs of Carly’s care, the family has incurred a number of expenses for some medications and for their many trips to Boston, plus has suffered a loss of income because Henni has had to give up the day care business she previously ran in her home.
Friends have established the Carly Laverty Living Memorial Fund, which can be reached in care of Citizens Bank, 28 State St., Boston, MA 02109. A yard sale was held last week as a fund-raiser, and more events are planned, like a ``Carly Night’’ at Eli’s Pizza.
Carly has also been getting postcards of encouragement that say things like "a hug and a kiss for Carly."
"It’s like the Sept. 11 phenomenon," said Jane-Ellen Olsson, Carly’s grandmother. "People have been coming out of the woodwork."
Meanwhile, they are amazed by Carly’s bravery in accepting her illness, and in facing and even participating in her treatment. Every day when the visiting nurse arrives, Carly interrupts her fairy-tale play with Kelcie to rub cream on her leg so the nurse can give her an injection to ease her recovery from chemotherapy.
"She is like my little warrior princess," Henni said.
After six long days Carly is home. As always it was a roller coaster ride. She experienced some nausea and had a couple of episodes of leg pain during the night. The pain was so severe at times that she was given morphine. Some of the medications can cause changes in calcium levels which can result in leg pain, however, her blood work always came back fine. An MRI of her spine has been scheduled for late next week. They will be looking for possible nerve damage caused by the tumor and to get a base line prior to the start of the radiation treatment. We also want to put to rest our fears that another tumor has grown.
When we went up to the ward on Wednesday afternoon Carly got to room with her friend Amber. Amber was fighting a fever this past week and by Sunday morning was able to go home. Carly made another friend named Amber. Amber is 12 years old and has leukemia. The two kept each other company during the last couple of days.
The traumatic moment this week was Carly pulling her IV needle from her port. The tube was wrapped around the IV pole when she attempted to climb on Henni's lap. To top things off she was getting her chemo medications at the time. The main concern was that the drugs got under her skin. The port did look puffy but, it soon returned to normal. After consulting with the doctor, Kendall, the nurse had to re-access her port without EMLA cream. She cried a little but she is one brave little girl.
Thursday I delivered a package from her pre-school, For Pete's Sake, which included a warrior princess crown and some books. Friday Carly's classmates and teachers called in on a speakerphone. We had a special visitor this week. Henni's cousin Andrea was up from Virginia. She stayed a couple of days before traveling up to Maine. Carly had a ball playing dolls with Andrea.
When we got home our friend Kim Robinson delivered dozens of cards from her third grade class and I read each one to Carly. We are all happy she is home for awhile and will just take one day at a time.
