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Rett's Roost The Light Family


The Light Family

Our story begins in early September 2014. Our 3 year old daughter Alison spent the spring/summer of 2014 battling constipation.  The very regular issue for a 3 year old took a turn for the worse when we were visiting our family in Virginia for Labor Day weekend.  Ali was dealing with quite a bit of pain in her abdomen and bottom area.  By the end of our family visit, however, her stomach had become distended and she was not eating or going to the bathroom.  When we returned home September 2nd we knew that we needed to take her directly to her pediatrician. After another examination, it was recommended we get a “professional” enema.  Before leaving the office, we pointed out some swelling Ali had around her tailbone.  At that point it was quickly recommended that we go to Boston Children’s Hospital Emergency Department for further testing on the chronic constipation. That day, became one of the longest days of our lives. Quickly, doctors in the emergency department found a very large tumor mass in Ali’s  pelvic region.  After two days of tests and scans, Ali was diagnosed with Stage 4 Germ Cell Yolk Sac Tumors. The tumor was not just in her pelvic region, but had spread to her liver, lungs and lymph nodes as well.  We were getting answers to why Alison had such a miserable summer, never feeling “great”.  But the news was devastating.  This was happening to our family.  “Cancer” was happening to us!

After being assigned a full oncology team, we were able to discuss treatment. The good news was that chemotherapy was supposed to be very effective against this type of cancer and the plan was to wipe it out completely.  We got started right away on four, 21 one day cycles of chemo which did prove to be very effective. Every cycle shrunk her tumor and seemed to be working on the rest of the tumor burden in her body as well. Unfortunately, the tumor was so big it would take more than chemotherapy to get rid of it. Ali was next scheduled for surgery to remove  as much of the tumor as possible.  Once again, the 6 hour surgery was successful. Although Ali’s surgeon couldn’t remove every piece of the tumor, he was able to get the majority of it and leave the best of the nerves – She would still walk and have function of her bowel and bladder.  The seemingly successful surgery along with the cycles of chemotherapy allowed the doctors to be confident that the cancer was gone.  She would now be under surveillance, which meant we would have monthly clinic visits to check her tumor marker via labs and then every 3 months we would return for CT Scans and MRI’s.

Of course, we were ecstatic about this news. Unfortunately, it was short-lived. The surgery was done in December and by February her tumor marker showed signs of the tumor increasing in size. We were looking at a relapse. It was confirmed in late February that the tumor was back, and that Ali would need to start treatment again – a stronger more potent chemo.  Our team decided that she would go through four more cycles of chemotherapy. Once that was complete we would need to supplement the chemo treatment with local control, which meant one of three things would have to occur – another surgery, radiation or a stem cell transplant.  The second round of chemo proved to be as effective as the first with her markers constantly going down. The doctors opted not to do any local control, but to keep her tumor marker under close watch – at the first sign of her tumor marker rising they would move fast forward with the stem cell transplant.

I don’t know how to put into words to show how strong, resilient and upbeat Ali was through her entire journey, but her strength gave our whole family strength. I think that she is a changed girl. She went from being in pain for months to almost immediately feeling relief the day the chemo started and the having a huge tumor removed from her body. I think she was just happy to be pain-free and then rolled with the punches after that.  She is 4 now, and a brand new girl.  Ali’s last round of chemo was in May of this year. Her scans have been clean and her tumor marker has stayed in a safe zone since!  Of course, she will have to go through these scans and blood work every month for a long time to come, but we are thankful for every minute that our family gets to spend together. Her doctors were amazing, our community support is beyond belief, and our family has been by our side. We praise God for every moment we have, He walked with us and filled us up every day with the strength to get us here.