CANCER WARRIOR, CANCER ANGEL…
If you have never met a child with cancer, then, I’d like to introduce you to Caitlyn, she has been diagnosed twice with pediatric cancer. While many statistics state that childhood cancer is rare, when you hear the words, “you have cancer” rare is the furthest thing from your reality. It’s REAL!
Caitlyn was diagnosed with Acute Lymphoblastic Leukemia on March 1, 2010. Genetic testing had been done and the results of the leukemia cells showed two subcategories; one being, a very serious gene mutation, Philadelphia Chromosome; which accounts for a very small percentage of diagnosed cases. After learning of the mutation, her treatment plan changed to high risk. Her course of treatment had many hurdles, several being life threatening, but she is a fighter and conquered each one of them and came out smiling. The journey of cancer treatment for children is unbearable, on top of that, Caityln and her family endured multiple surgeries, setbacks and near death experiences. But, on July 1, 2012 Caitlyn took her last dose of chemotherapy. Until…
On July 31, 2013 Caitlyn and her mom were at what was supposed to be Caitlyn’s last monthly appointment off treatment, at the Bronson Pediatric Hematology/Oncology clinic, when her blood tests returned, they learned the Leukemia had relapsed. Devastated, and in shock, the family was faced with cancer once again. They had just started to breathe a bit easier with each monthly appointment that passed, and clean blood tests continued to prevail. The very next day, Caitlyn had a spinal tap and bone marrow aspiration, and was admitted to the Bronson Children’s Hospital to start chemotherapy all over again. Saying good bye to the life she had grown accustomed to… remission.
During the first diagnosis and treatment journey, they met many families in various stages of treatment in the Bronson Pediatric Hematology/Oncology Clinic, however, families only saw each other in the clinic for brief times or if the children happened to be inpatient at the same time. At a time when you need the most support, it is difficult to reach out and find what you need.
“During the time Caitlyn was off treatment a group of parents saw a need for a support group. I started going to the monthly dinners, thinking maybe I could offer some support to newly diagnosed families, after all, if Caitlyn could beat it with all she had been through, so could their child. Little did we know that we would be on the receiving end of the support given by this wonderful group of parents. As the parent of a child with childhood cancer I am very thankful that CFU and PACKS are here. After all- we all have the same common goal, 1st for our children to be cancer free and 2nd to raise awareness for childhood cancer, and much needed cures.”…Melinda Jackson, Caitlyn’s mother.
After relapsing Acute Lymphoblastic Leukemia with Runx 1 mutation of the leukemia cells Caitlyn began chemotherapy once again. Dr. Mullins felt it would be Caitlyn’s best chance to becoming cancer free and staying cancer free to have a bone marrow transplant, especially since she had a full sibling match for a donor. August 1, 2013 through the middle of October she received treatment at Bronson Pediatric Hem/Onc clinic and hospital. She developed complications from almost the beginning which included drug induced diabetes, 2 blood infections, and kidney stones. Once again she overcame them all.
On October 18th Caitlyn was admitted to Mott Children’s Hospital to start conditioning for transplant. She had surgery to remove the original port and replace it with one with 3 places to administer medicines. Then she had 2 days of high dose chemotherapy followed by 3 days of twice a day total body irradiation. October 24th Caitlyn received the most precious gift that she could ever receive, bone marrow from her 24 year old brother. The days that followed things went smoothly, there was even talk that she could possibly be discharged earlier than expected.
Then the unthinkable happened, Monday November 4 Caitlyn developed Veno Occlusive Disease again. She was moved to the pediatric intensive care unit and sedated to give her body time to rest and allow the one and only medicine available (yet still in trial) to work its magic as it did before. Sadly more complications started, her kidneys started to shut down so 24 hour continuous dialysis was started, her blood pressure couldn’t be maintained and she started bleeding internally. The Difibrotide had to be stopped, but within 24 hours it was able to be restarted.
Saturday, November 9, 2013 after consulting with the doctors we as a family made the decision to stop the extraordinary measures that were keeping Caitlyn alive as we knew that no matter what we did we weren’t going to get the miracle that we prayed for. At 10:21 pm November 9, 2013, Caitlyn earned her angel wings surrounded by family and many of her friends.
We will continue the fight until the cures are found for childhood cancers in Caitlyn’s name.
June 9, 2001 – November 9, 2013