When my daughter Kaylah was 4 years old, she got a stuffy nose and a fever that lasted over a month. Doctor after doctor said antibiotics. Finally, one doctor in Mount Vernon said she had polyps in her nasal cavity so we needed to go to Children’s Hospital and have them removed. After making the arrangements for somebody to take our other two children, we went to Children’s Hospital in fear for our daughter’s surgery. While waiting for surgery a Doctor came in to talk to us and said they were going to have to do a biopsy on the mass they found in her head. This was the first time we heard mass and not polyps. My 4 year old little girl was diagnosed with Embryonal Rhabdomyosarcoma.
This required 10 months of intense IMRT Radiation and chemotherapy. How can this be? She doesn’t smoke, she doesn’t work around chemicals, and she sure doesn’t drink. Her little life has just begun but now she is fighting to stay alive. Several months went by and her famous saying was “Bald is beautiful”. Everyone knew Kaylah now in Stanwood Washington. We ran a normal life the best we could. We spent a lot of time at Seattle Children’s Hospital. We were one of the lucky ones that got to go home and didn’t have to stay at the Ronald McDonald House.
Kaylah was interviewed and on the front page of the newspaper, I saw my baby girl with the caption “princess tomboy” lol In one hand she carried a puke bucket, in the other she had a doll covered usually in mud. After 10 months, our nurse practitioner Sue told us the best thing we ever heard. Her scans are fine. Those of you who know Sue and have gone through this, know exactly what I’m talking about. Instant sigh of relief, but now it seems our security blanket of chemotherapy is gone.
Now it’s a waiting game. Will it come back? Will it not? Will she survive? That was over 3 years ago. Today she is 8 years old, healthy, and doing well. I pray to God every day for children and their families who have had cancer, those that have survived, and many others who have not. a couple months ago a Rhabdo survivor made it to five years. While just months before that, a Rhabdo took the life of a really neat young man that we loved and got to know. That is the reality that we live in. A cold is not just a cold, a fever is not just a fever, and in our case a bloody nose is not just a bloody nose. never go to bed without saying I love you. never forget to hug your children. Never forget to kiss them and hold them tight. Never forget to let them know they are loved and let them love you.
So far we have beaten the odds but the thought of her getting cancer again has never slipped my mind far enough away that I may rest easy. I don’t think I ever will, even when we do hit that five year mark. That magic number is still so far far away. Today Kaylah is healthy and vibrant. Her hugs make me feel like no harm could ever come of us. God I pray we never have to go through that hell again, yet in a weird way, I’ve met some of the most amazing people I will ever know because of the journey God has placed us on. Thank you God.
10 months of intense IMRT radiation and chemotherapy. How can this be? She doesn’t smoke, she doesn’t work around chemicals, and she sure doesn’t drink. Her little life has just begun but now she’s fighting to stay alive. Several months went by and her famous saying was “Bald is beautiful”. Everyone knew Kaylah now in Stanwood Washington. We ran a normal life the best we could. we spent a lot of time at Seattle Children’s Hospital. We were also the lucky ones that got to go home and didn’t have to stay at the Ronald McDonald House.