Brittany's Story
Brittany Marie Cayemberg was born in the fall of 1993 to Michelle and Randy Cayemberg. Although she was born breech, she was a happy, healthy, normal baby girl. At the age of 2-3 months she was nicknamed “Mouser” by her Uncle Terry, because while he was holding her she made squeaking sounds. At a young age she seemed to always want to “help” or try to do it herself. One of her often used phrases was “I DO” ~ not wanting any help as she tried to figure things out on her own. Two years later in 1995, Brittany's sister, Alison, joined the family. Brittany would help Alison and always kept an eye on her; there was a close bond between the two right from the start.
Brittany’s (and our) lives changed in March of 1997. She woke up in the middle of the night complaining that her shoulder hurt. After rubbing it, she said it felt better and went back to sleep. Sunday morning when we woke up, at approximately 7:00 a.m., Brittany was already up and holding her arm, saying her shoulder still hurt but in a different place. This seemed odd as Brit always had a high tolerance to pain. We took her to the emergency room to see if she dislocated her shoulder or if there was something that needed medical attention. X-rays revealed that her shoulder was fine. However, the following day when the pediatrician reviewed the x-ray, he noticed a tumor located between the upper part of her lung and her spine. There were a lot of appointments, scans and biopsies done over the next few days. The tumor turned out to be neuroblastoma, a malignant (cancerous) growth that develops from nerve tissue. It occurs in infants and children, most commonly diagnosed before age 5.
Surgery was scheduled for the following Tuesday. Monday we spent the day at the hospital getting ready for surgery the next day. It was going to require a thoracic surgeon, as well as a neurosurgeon because the tumor was attached to her spinal column. Late that afternoon the surgeon decided he was not comfortable doing this surgery. He recommended we go to the Mayo Clinic. An appointment was made for the following morning and off to Rochester, Minnesota we went. By the time we left the banks were closed, so we borrowed money and a relative's car because ours wouldn't make the trip. It was hard to leave a tearful two-year old behind.
At Mayo, more scans and tests were done and redone. While there, Brittany’s cancer was classified as "High Risk”, stage 2A. “High Risk” meant the cancer was likely to come back. Brit was staged this because of her age. Neuroblastoma is best cured in children between the ages of 12-18 months; the older the child the greater the odds against curing it. Stage 2A meant the cancer was still in the area where it started and limited to one side of the body, but not all of the visible tumor could be removed by surgery. Lymph nodes enclosed within the tumor may contain neuroblastoma cells, but lymph nodes outside of the tumor should be free of cancer. We did the first round of chemo at Mayo and then came home.
We did the remaining rounds of chemo in Green Bay until it was time to go back to Mayo for Brittany’s surgery. It would mean the surgeon basically lifted her shoulder blade up out of her and spread her ribs to get to the tumor. Afterward she was very sore from all the manipulation and weak from the chemo. All she wanted to do was lie in bed. The hospital staff needed to get her up walking to prevent clotting and other side effects from the surgery. Initially, Brittany refused. The staff and her parents kept pushing her to get up, but without success. She was not going to do it. Finally someone asked her, "Are you a man or a mouse?" That was the final straw. She whipped her blankets off and said, "Fine! I will do it, but I AM ONE TOUGH MOUSE". Not only did she walk as far as they wanted her to, she went farther. This attitude and determination was something Brittany always had and she carried it with her, her entire life. It seemed no matter how tough things were for her, if she wanted to do it; she was going to do it, because once her mind was made up to do something, nothing would stop her. She was always willing to help and was usually very cooperative with everyone, including the doctors and nurses. Although these treatments were difficult, Brittany took them on as part of life, with an "it is what it is" attitude.
Following surgeries and during treatments we would read books to Brittany. It wasn't long before she asked if we could teach her to read. I don’t think there was a Dr. Seuss book printed that she didn’t read well. Through all of this, all Brittany wanted to do was to be a kid. When she was able, she went to school, played T-ball, and soccer, and even made the Green Bay Lightning soccer team - and loved it. She was not the best player out there, but nobody tried harder then Brittany.
At the end of treatment, scans were done looking for evidence of disease. These were gradually spaced more and more months apart as they continued to show "No Evidence of Disease" (or "NED") or "IN REMISSION". On one hand, we were happy there was no disease, but on the other hand, it was hard to go so long without knowing if something was growing. Ultimately, we made it to the five year mark. Usually that means "Hallelujah! You kicked cancer!” But that would not be the case for Brittany.
At the age of 9 the cancer returned with a vengeance - in multiple places. This time it was stage 4, meaning the tumor had spread to different lymph nodes, the skin, or other parts of the body. We opted to try radiation, another surgery to remove the tumor, and a different drug. This was hard for Brittany, because by now she was a normal girl in school. Only her closest friends knew she had had cancer. Now if her hair fell out from the treatments, everyone would know! Luckily, that didn't happen. She was able to return to school after missing only a month or two. School and getting good grades were very important to her. For now, it seemed that the cancer had been put to rest.
During middle school, she developed a very tight group of friends that acted more like sisters than friends. These friends (who became known as the "6-Pack") were the most important thing in her life. But Brittany also was willing to help others and meet new people. She liked to take on challenges; she took up playing the violin and worked hard to be the best that she could be. She really enjoyed playing in orchestra and made first violin. Brittany was never satisfied with her accomplishments; she always felt that she could do better. This was her attitude toward school, music, and it also applied to her Green Bay Lightning soccer team.
In October of 2006, just after turning 13, the cancer returned once again. This time it was in the bone marrow and again, a Stage 4. Brittany needed more chemo. We opted for regular chemo, followed by high dose chemo which would require a stem cell transplant. This is similar to a bone marrow transplant, which means the immune system is depleted and unable to fight off any infection. This required a long stay in isolation (approximately 40 days) in the same sterile room at the hospital. During this third bout with cancer, treatment took place at Children's Hospital of Wisconsin. Following her discharge from there, she was essentially under house arrest because her counts were too low and she couldn't risk being out in public and becoming sick.
Through all of this she was determined to stay in the same class that all of her friends were in; she was not going to get held back. So essentially she was home schooled and tutored. It was hard to see her continuing to plug away at her work as the chemo dripped into her frail little body, knowing she was on so many pain meds that you wondered how she could do the work. But do it she did, with the help of family and friends. She would figure most of it out on her own, and would get mad when she couldn’t. As always, Brit figured out a way to get through it, with the help, support and well wishes from her family, friends and people she never even met.
Brittany was bound and determined to make it. Her goal was to play at least one soccer game with her Green Bay Lightning soccer team. At that game, with tears in every parent's eyes, and with the players from both teams watching in awe, she ran her best and kicked the ball with the biggest smile we had ever seen. The best part was the whole team wearing matching bandanas on their heads like the one Brittany wore to cover her bald head. That's what makes a TEAM!
Her fight wasn't over yet. Brittany was accepted into a clinical trial at Sloan-Kettering in New York. This was an experimental, antibody treatment that was very painful. Knowing everything that Brittany had already been through, the three of us gave Brittany the option of choosing not to go through with it. Her response was, "What choice do I have? And if nothing else, it may help somebody else." This is a testament of how selfless Brittany was. These treatments were started in July and went until the following March. They would require a trip to New York one week a month until the treatments were done. To ease the pain, Brittany was given pain medication, but these meds made Brittany downright mean. These were very trying times for everyone. But there was a job to do and we all dug in and got it done, with the help and support of a lot of people. It was one more example of what teamwork is all about. Through all of this Brit managed to keep up with school and still be a teenager as much as she could. It was very hard for her as she kind of fell out of the loop with her friends from being home so much, but eventually it all worked out because she and her friends had a bond that could not be broken.
In April, the cancer was back. This time we headed to Children’s Hospital of Pennsylvania for MIBG treatment. Essentially this is high dose radiation treatment. Brittany told us she was not going to miss her eighth grade graduation and she wanted to enjoy her freshman year of high school. Well, you guessed it … she made it! She and her friends wore fancy dresses, took a limo ride and went out to eat. After school was out and radiation was done, we went to Disney on a summer trip to get away.
Brittany started more oral chemo and went to high school. She was in the 9th grade and loving it. She was not going to be denied. She continued to focus on school and keeping up her 4.0 GPA because she wanted to get into the college of her choice. (UW-Madison was mentioned, but others were as well.) At the same time, she was involved in as many activities as she could be. She went to dances, and was on Homecoming Court. She became a Student Advisor for Preble's Sting Cancer group. She continued playing violin in the orchestra, and was on the Math Team. She volunteered for Families of Children with Cancer, St. Baldricks's, and the Treasure Chest Foundation.
Even though she was hurting inside, she was not going to let anything get in her way. She created a quote, "You determine your strength…so stay strong." She did volunteer work from her hospital bed. As a Student Advisor for “Sting Cancer", she often left the hospital just in time to change and head to an event. Even though we knew she was weak, it was just what she had to do. The group helped her as much as she needed to help them.
Although the cancer was slowed for awhile, eventually it became unstoppable. This was when Brittany asked us to start a foundation in her name. We agreed to start with a scholarship fund to get the foundation started, with the hope of eventually branching out to other work since Brittany was involved with many groups.
Her health took a turn for the worse in January of 2010, so we opened up our home to any of her friends and our family that wanted to spend time with her. We are so glad we did this as it helped us, as well as so many of her friends, to say good-bye. There were so many people that came to see her it was unbelievable. Brittany had an effect on anyone that ever met her. It would have been very easy to be selfish and close the doors to our home so we could have had more time with Brittany. But that is not what Brittany or our family was all about. Without ALL of the people that helped and supported our whole family, we would have never made it as far as we did. She was a gift to all of us. And it is with great pride that her legacy continues.
Brittany had a love for life, and a desire to make a change. We ALL have learned some very important lessons from Brittany of what life is really all about. Through Brittany we have learned that without friends, family and a love for life, we are nothing! Even though Brittany is gone physically, her spirit lives on through Alison. We see this each and every day. We know deep down in our hearts Brittany is proud of her sister. And Alison is very proud to be Brittany’s sister.
We truly believe that Brittany had some things she needed to tell her friends during those last days and she has a message that she is still telling everyone today, through her foundation. Her motto was “You determine your strength. So stay strong.” Strength does not always have to be measured on a scale. It can be measured in growth from where you start to where you end. Brittany had strength beyond her years in her courage and determination. We know she would have gone far had she been given the chance…The Brittany Cayemberg Foundation would like to give others the chance to go farther than she did with a scholarship in her honor. The Brittany Cayemberg Foundation would like to give others the chance to go farther than she did by recognizing a student who is facing every day challenges with dignity and determination as our beloved Brittany was.