Today’s guest post was submitted by RMB community member Alyna Harrall in honor of September being National Childhood Cancer Awareness month.
My daughter, Samantha, was very healthy as an infant with the exception of having reflux which was partially controlled with medication. Fast forward to 14 months old, she had a cold for 5 days – nothing unusual, no fever just sniffles and coughing. Since I was a new mother, I took her to the doctor the Monday before Labor Day weekend in 2012. Her doctor, Dr. Tammy Roesler, found she had an ear infection & a little croup. Dr. Tammy didn’t think it was necessary to expose her to an x-ray and sent her home with a nebulizer & a prescription. The next day, Dr. Tammy called me on her day off and said she had thought about Samantha all night and thinks she should have a chest x-ray.
I took Samantha for an x-ray that day and Dr. Tammy called me to say there was something in or behind her lung. In case it was something serious, she wanted me to check into Renown E.R. the next day and get a CT scan. Wednesday we got the CT scan and I saw the E.R. doctor viewing it on the computer with several other people looking at it with him – I knew something was wrong. There was a mass attached to her lungs, esophagus (explains the reflux) and her heart. We were admitted, given 3 different diagnoses, and told Samantha would have surgery the next day. On Thursday they did an MRI under sedation which was horrible in itself. Holding your 14 month old daughter as they administer the medication to sedate her and feeling her go limp in your arms is traumatic to say the least.
We returned to her room after the MRI and was then told she needed another MRI. The word oncologist was spoken and we proceeded to take her back for another MRI and once we handed her over for the MRI, my husband and I collapsed onto the floor of the hallway sobbing uncontrollably. Once we were back in the room with Samantha, the oncologist spoke to us as well as a pediatrician, they talked about doing a biopsy and then coming up with a game plan. Dr. Tammy came to the hospital, explained the limited resources in our area for the type of cancer they believed it was. She suggested that we take her to Children’s Hospital Oakland (CHO). She was able to have the oncologist from CHO, Dr. Raphael, speak to us by phone and we decided to go to not do anything further at Renown. Due to the fact she was stable and not a lot would be done over the holiday weekend, we spent the Labor Day weekend at home to pack and prepare. We were told we could be in Oakland for months. It was nice to have a reprieve from the hospital but at the same time my husband and I were anxious. The thought of possibly losing our daughter weighed heavily and made it hard to breathe.
We arrived in Oakland the Tuesday after Labor Day. Wednesday we prepared for her to have a biopsy and to have a line placed in her chest to administer medications. I still believed that everyone was wrong and that it was not going to be cancer so I fought them placing a line her chest. The oncologist told me they thought it was a neuroblastoma cancerous tumor and if it wasn’t, it would be something similar and she would need the line placed so I agreed. We were told after surgery it was a neuroblastoma tumor but staging would need to be done and a determination if there was N-myc amplication – which is a bad thing.
The waiting was the worst. I am a woman who can handle any crisis and figure out what needs to be done to resolve any crisis. In this instance, I had no control and this involved my precious little daughter. I could not stop crying. I could not deal with anything. Luckily my husband stepped up and made decisions that needed to be made, made sure our daughter was being taken care of and he stayed strong for me, for us.
During this time we learned how to flush her line daily and how to draw blood from the line as we would have to do that weekly while under treatment. A week went by and no further information. Thursday of the week after surgery, they let us go home and the results came in Friday. She had a Stage 3 neuroblastoma tumor without N-myc amplification. She would require 4 rounds of chemo and possibly surgery. The following Monday we went back to Oakland for chemo. I cried from Sacramento to Oakland, so much fear of the unknown that was in front of us and our baby girl. Chemo is administered through IV and the IV bags have bio hazard stickers on them. The nurses who hang the IV bags are dressed in protective gear. It’s hard to sign off on this treatment, the treatment that is supposed to save her life is harsh. We had to wear gloves to change her diaper for 24 hours post treatment.
Throughout her chemo treatments, her immune system was sometimes depleted. We had to be vigilant about germs and had to keep her inside the house. Samantha was resilient throughout treatment and had her final chemo treatment after Thanksgiving. She had additional scans in December which revealed the chemo detached the tumor from her heart and it had shrunk. She underwent surgery 1/2/13 and has been cancer free ever since. At this point she has CT scans every 6 months and will begin having them annually next year.
Samantha’s journey through childhood cancer was not average by any means. In the realm of childhood cancer, her path was easy. The length of treatment for any childhood cancer averages one year and many times involves stem cell transplant, immunotherapy, radiation etc. I didn’t know, until my child had cancer, that the treatment for childhood cancer is archaic – a new chemotherapy drug for childhood cancer has not been developed in more than 30 years. This is because pharmaceutical companies help with research dollars for adult cancers but not childhood cancers because it’s not profitable.
The Federal budget for cancer research only earmarks 4% for childhood cancer. Childhood cancers are different than adult cancers and cannot be treated the same way. This is why Childhood Cancer Awareness month is so, so important. Generally people do not know about the lack of funding for research and the archaic and barbaric treatment kids have to face. I think people do not pay attention because their child is healthy. The problem is that childhood cancer is an epidemic and EVERYONE needs to pay attention so that if a child they love is diagnosed with cancer, maybe there will be better and more modernized treatment for that child.
If Samantha’s story has inspired you to donate, a great local charity is the Nevada Childhood Cancer Foundation.