September is Childhood Cancer Awareness month
While many of your already know our story, what most don't know is how truly wonderful the staff, doctors, child support and research teams are at the Children's Center for Cancer and Blood diseases at Children's Hospital of Los Angeles. Without the funding for research for childhood cancer, we may have had to spend many more weeks, days, hours at Children's before they diagnosed our daughter with a Neuroblastoma Tumor. I wanted to tell our story to raise awareness for Childhood cancer and how raising funds for research can help support, advocate and cure cancer in all our children. A fact I learned - "each year in the US, there are an estimated 15,780 children between the ages of birth and 19 years of age who are diagnosed with cancer. Approximately, 1 in 285 children in the U.S will be diagnosed with cancer before their 20th birthday. Globally, there are more than 250,000 children diagnosed with cancer each year. Every 3 minutes, somewhere in the world a family hears the devastating words that their child has been diagnosed with cancer. While survival rates for many types of childhood cancer have improved, for too many children, cancer will shorten their lives too soon. CANCER remains the most common cause of death by disease for children in America." (statistics from the American Childhood Cancer Organization)
We count our blessings every day, that kind of blessing that catches my breath sometimes when I'm caught off guard, and remember what exactly we have dealt with the past year and a half. We also know how truly, truly lucky we are. Not only because have we had the best support from our family, friends and community, but also because we live within miles of one of the best ranked hospitals for Childhood Cancer, one that focuses and researches Neuroblastoma cancer. We call this fate, especially after the numerous families we met in the waiting rooms or recovery rooms that traveled hours or days to receive the same treatment and tests our daughter received. We did not know this before. We learned all of this in March, 2015.
While our story ends in one of the best possible ways we could imagine, it is important to understand that there are so many other families whose lives are turned upside down and deal with this disease for months and years, through numerous treatments of chemotherapy, radiation and surgeries. Through our month of testing and year of doctors visits, we were able to meet some of these families. It's so extremely painful and heartbreaking to see these kids go through what they have to go through and while my daughter did not have to have chemo or radiation, I feel this huge empathy for all the families that their kids have to have multiple rounds of chemo and radiation treatments, spinal taps, surgeries and tests. No child should have to go through this.
How we found out continues to give me goosebumps and reminds me how fortunate we are to be able to afford proper healthcare and to be able to visit doctors on a regular basis. Mila was born with one kidney. We found out at 20 weeks that she only had one functioning kidney and since her birth we have tracked this one healthy kidney through routine doctor visits and yearly ultrasounds with her nephrologist. It was during that yearly visit that the ultrasound technician found a very large tumor pushing up on Mila's kidney. While I thought she was being very thorough on her ultrasound scan, I also thought it was odd that she was taking an unusually long time and continued to come back and gather more scans. However, in my mind I just thought it was normal and didn't think anything else of it . Fast forward an hour later and our lives were completely changed. Sitting in our nephrologists exam room, Mila and I playing eye spy out the window, our doctor came in and uttered words no parent wants to hear. "While her kidney looks very good, we have found a large mass pushing up on her kidney, most likely a "tumor". We have already started the process to get you admitted into the hospital and in the next hour we will have a bed ready for Mila on the 4th floor. I just want to warn you, the 4th floor is our oncology floor. We hope to start tests as soon as possible but please be prepared to be here for a while, weeks, maybe a month". While I'm not sure if I remember anything else that she said, those words continue to haunt me today. We had our day planned. Mila and I were picking up flowers for one of her teachers birthday, I would drop her off at school and head to run some errands I was preparing lists for while I waited in the doctors office. Again. I am constantly reminded how blessed we are. We were admitted into the hospital an hour later and that night Mila had her first official scan to review what kind of tumor they found. A day later, in her new room, multiple doctors came to visit Mila, to tell us she had a large neuroblastoma tumor. That week was spent doing multiple tests and deciding if they wanted to biopsy the tumor. Late Wednesday night I signed papers with a surgeon to go in and biopsy and possibly remove the tumor and by Thursday afternoon they had decided the location of the tumor was too risky to operate on and since she only had one healthy kidney they needed more tests, wanted to see if the cancer had spread, before going in to remove the tumor. Based on all the scans the tumor was connected to the main artery to her one and only functioning kidney. If anything happened to that artery during surgery, she could go into kidney failure and it could complicate much much more. However, they decided they wanted to do a bone marrow biopsy and we were carted off to an operating room so they could put her to sleep for the procedure.
An hour later and an extremely difficult time waking up.. mainly because she hadn't eaten in over 12 hours since the doctors were thinking they wanted to biopsy the tumor, Mila was released from Childrens Hospital and we had instructions that she would come back the following week for a very specialized MIGB scan. A two part series which would include coming into the hospital to have an IV put into her arm so they could inject her with a type of radiation that would go into her body and find all the neuroblast cells that would then show up in this MIGB scan the following day. Mila was always a champ through the whole process, being supported by every nurse, child support staff or doctor. Mila was also put to sleep for every scan. At only 5 years of age, there was no way she could sit in the scan, completely still for 3 hours. It was through those scans that we were able to really understand what we were dealing with and what so many other families have to deal with on multiple occasions and visits.
After two weeks of scans and tests, multiple doctor visits with specialists, urologists, surgeons, etc.. we found out the cancer had not spread and was only in the tumor. Mila was scheduled for surgery and a week and half later she was admitted again to remove the tumor. The surgery took almost 7 hours and we were prepared to spend another week or so at the hospital with the possibility of having to go to ICU for a few days first. With Mila's tenacity and drive.. there was no ICU and she was determined to have a grill cheese after surgery. So two days later she got out of bed, walked over to the bench and demanded her grill cheese. And 4 days later she was released from the hospital. While we spent the rest of the year with monthly or bimonthly doctors visits and MIGB scans, every scan came back negative with no signs of any new cancer cells. Her doctors were very happy that the cancer had not spread mainly because of her one kidney. The chemo and radiation could have been extremely hard on her body especially for that one kidney and it would have posed many other problems we were not prepared to deal with. There is never a day, we don't consider ourselves so extremely lucky.
Mila has her next appointment with her Neuroblastoma oncologist in a few weeks. Our hopes are that this might be the last one and we will only have to continue follow ups with her kidney specialist. It seems fitting that her last visit be during a month that has become a very important month in our household.
And so, while we know there are so many families and kids dealing with this every day and their stories varying from child to child, these little warriors and fighters battling this disease. We hope our story and as well as many other families stories encourage you to donate and support Childhood Cancer Awareness.