There are so many of you who personify what the Cancer Fears Me slogan is all about! You refuse to give in to the many defeating emotions that cancer tries to inflict. This page is all about you and what you are doing! Please send us your story or someone you know who shows what Cancer Fears Me really means.
CFM Spotlight: Julie Weber, Colorado Representative for the Conquer Childhood Cancer Act and founder of The Kayla Weber Believe Foundation.
Our first baby girl! Life was great! My husband and I had been in love for 9 years; what could be better than expanding our family and sharing our love for a child! Our baby Kayla was born August 30, 2006. I had a great pregnancy and she was delivered with no complications. Everything was wonderful! She was so beautiful and had her daddy’s big, blue eyes that would melt my heart with just a glance. I stayed home with Kayla for a couple months worth of maternity leave. It was precious time (more than I would ever know). After I went back to work, Kayla began eating less and less. She started vomiting frequently, and the pediatrician started treating for acid reflux (a common infant condition). We were changing formulas, trying different prescriptions, etc. Her check-ups and physical examinations had always been fine. She slowed down on her weight gain, but her doctor wasn’t too concerned just yet.
It was 3 days before Christmas (the day before we were set to leave for our first family vacation to Baltimore to visit all of my family and Kayla would meet her Nana and Pop Pop and Aunts!). We had scheduled a trip to the pediatrician to do a weight check on Kayla to make sure she was still gaining. Her weight was fine, but upon examining her physically, her doctor was concerned with her belly. She couldn’t tell if it was just full of air, or if there might be another reason for its sudden firmness. At this point, I was so hyped up and excited to go on our trip, I really didn’t think twice about it. She said she just couldn’t sleep if she didn’t take it a step further. She ordered some blood work and even an ultrasound at a local radiology building. We left the office and it wasn’t until I was sitting in the lab waiting room that I had this overwhelming fear come over me. What would I do if something was actually wrong with Kayla? I started making phone calls, breaking down in tears with everyone. I wanted to start the prayer chain as soon as I could. Kayla was poked and had her blood drawn. While that was processing, we headed to the radiology building. It was now that I called my husband, Jason, and told him to stop what he was doing and meet me. I knew an ultrasound would show immediate images and I couldn’t handle it alone. It was a rough exam as Kayla was very hungry and very squirmy. However, they saw enough to be able to measure a 4 cm mass outside her adrenal gland. I can’t even describe the fear, pain, physical heartache, stress, and basically literal torture that overcame us. I am confident that other parents in our situation can completely relate. It is an experience I would never wish upon even the worst of people.
Unfortunately, our story just gets worse from here and this would be the first of many “torturous” moments. We were sent to an oncologist immediately after her ultrasound. Little did we know, we would never visit her “pediatrician” again. This oncologist gave us the news that Kayla most likely had the malignancy called Neuroblastoma. Holding on to our last hope that this could be a benign growth was in the past. We were truly facing a nightmare. Not only did this tumor present itself as this mass outside her adrenal gland, but a CT scan performed hours later would show that the tumor had spread into her liver. Her liver was actually what her pediatrician was feeling firm into her abdomen. The tumors had completely invaded it, increasing the size significantly to where it was now down into her pelvis. Both Jason and I had to hold ourselves up to keep from passing out. It was just that devastating. She wasn’t even 4 months old. Merry Christmas!
Once Kayla was diagnosed, her condition continued to worsen. She was admitted the day after Christmas to obtain a biopsy of the tumor. What was supposed to be a quick, overnight trip turned into a 5 week stay on the ventilator in the PICU and 4 more weeks on the oncology floor. I didn’t realize laying Kayla on the operating table December 26th would be the last time I would have her in my arms for almost a month. Kayla had developed a bleeding disorder because of the strategic positioning of this tumor in her liver. They opened her up in the OR and she had no way to clot her blood. She bled out for 2 weeks, receiving at least 100 blood/platelet transfusions. It was an absolute miracle she survived the 5 trips to the OR those couple of weeks. They also decided to begin chemotherapy even though this was NOT the condition within which chemo should be inducted. They just had NO more options. Kayla was truly our miracle baby. She came home on oxygen and a feeding tube as she had to be completely rehabilitated after so long being unconscious. She graduated from those pretty quickly and continued to receive chemo treatments. She stopped those around May 2007. The doctors and experts expected her type of Neuroblastoma (Stage 4-S) would regress on its own.
Kayla was doing awesome! She was crawling, laughing, playing, and loved being around lots of people. In July Kayla started to show symptoms again. She didn’t want to eat anything, she was fussy and didn’t want to go out and she was losing weight drastically. This was NOT Kayla. After several trips back to the doctor, they discovered her tumor had progressed. We went from one CT scan in July that showed no changes to a scan and several other tests in August that showed her tumor had spread all over her body. It invaded all the cavities of her belly, her pelvis, her lymph nodes, her lungs, her bone marrow and her little bones. Once again, Jason and I became physically sick and had to jump back on this roller coaster of pain and despair. She was now a Stage 4 Neuroblastoma patient facing a real uphill battle. She was not even a year old. This new protocol would involve numerous rounds of chemo followed by a very invasive surgery to try to remove the remainder of the tumors. It wouldn’t end there. She would face a stem cell transplant and then follow-up with radiation and other cutting edge treatments. Cancer treatment for Kayla was “just another day.” She was so used to it that trips to the hospital were almost “fun” for her – at least the part where she got to play with fun toys, watch TV and cruise the halls in her little red wagon. She handled everything so well that we couldn’t help but feel comfortable and confident that she would beat this! I guess that is why we were thrown so off guard when, in November – the day after Thanksgiving, we had to admit her with more complications. She had stopped eating again and after more scans and tests, it was shown that her tumors had basically become nonresponsive to chemotherapy. We tried different drugs and did whatever we could in her unstable condition. It was just one, short week later that my husband and I, after 15 short months with our daughter, were laying in bed next to her saying goodbye. Kayla went to Heaven just 8 hours later.
As a first time mom, this experience can lead to so many questions. I begin thinking why didn’t I know? What could I have done? What can I do now? I feel one of the most overwhelming fears of a parent of a child with cancer is that there is nothing we can do to fix them. Tylenol won’t work; a cuddle and a lullaby won’t make their pains go away. We aren’t doctors and we have to put our faith in the experts, the research and the medicine. Kayla has an unbelievable following through CaringBridge.org (visit kaylaweber) and MySpace. A group has gathered together called “Team Kayla” and we are honoring her through The Kayla Weber Believe Foundation. We are going to do whatever we can to fight for these children while they are battling for their lives. The advances in medicine in this country are superb – some of the best in the world. However, 25% of children with cancer will still lose their fight. The number is about 25 points too high in my opinion. Cancer is the #1 disease killer of our children. These babies and adolescents are being treated with the same drugs 60 year old men and women receive. The many that do win their battle are likely to be left with lifelong complications from these treatments. There is a bill trying to make its way to a vote in Congress right now. It is called the Conquer Childhood Cancer Act of 2007. The group behind the bill is the Children’s Oncology Group united with the National Childhood Cancer Foundation. They are the foremost researchers of children’s cancer. We believe the children need attention on a level different from adults. They need segregated funding and grants and other aids in research. This bill will do so much for them! I will pass on giving more details and refer you to www.curesearch.org. CureSearch’s “Reach the Day” campaign is an awesome way to get involved right online! You can also follow Kayla’s CaringBridge page for other updates and strategies on contacting Congress www.caringbridge.org/visit/kaylaweber.
Getting involved in this way is therapeutic to me. I can no longer sit back and ask, what can I do? We can do something! I urge you to get involved. We are the ones these Congressmen want to hear from. We are the ones with the voices that could help so many children dealing with this unimaginable disease and save the lives of children like my precious Kayla!