Kale was diagnosed with High-Risk Acute Lymphoblastic Leukemia March 22, 2019 at the age of 8. It rocked the West household and began a journey we never thought we’d be on. A couple of weeks following a tonsillectomy/adnoidectomy, Kale developed some lymph nodes on his neck, he was vomiting bile in the mornings, had loss of appetite and was very tired and sluggish. The morning of his diagnosis he woke up with petechiae and a bloody nose that wouldn't quit. Our regular doctor was out of town so we saw a doctor we'd never seen before. Dr O'Connor trusted his instincts and sent us over for lab testing. Kale's appointment was at 8:45am, and by noon we were admitted to the hospital and they told us our son had a blood cancer. He was considered high risk because his white blood cell count was so high at the time of diagnosis. The doctors moved quickly, he had his port placed the very next day and chemo began 2 days later. It was a very scary and unknown time – we were numb and on information overload. Kale however, was amazingly strong and resilient.
Everything happened so fast. Our boy began the fight of his life, and as predicted has been leaving his mark along the way. We have been blessed with a phenomenal HemOnc team and pediatric nurses. They have become family, providing for us a safe, trusting environment in which to thrive. It was found that Kale had a genetic mutation caused by his leukemia called CDK2NA which significantly lowered his chances of kicking ALL. It put us on a track for bone marrow transplant and increased his chance of recurrence - it's a chemo resistant mutation. That was a devastating punch to sit and listen to a doctor give you percentages of your child
With ALL, the patient’s response to the first 30 days of intensive chemotherapy treatment is very important to their overall survival and remission. Kale miraculously was found to be in remission AND his mutation killed at the end of that first 30 days. The overall chances of that happening were very slim, so we praise God for his hand in Kale's treatment and continued recovery. He has continued treatment over the last 2 years consisting of IV chemotherapy, at home oral chemos, oral steroids, multiple spinal taps with chemo injected into the spine, and a series of side effect medications. When we started, Kale could not swallow a pill, now he is a champ and is so responsible about making sure they’re taken and he doesn’t miss a dose. There were times he was taking upwards of 26 pills at a time!
Kale is well known with the nurses and caregivers at the hospital and our Oncology clinic because he is so sweet natured, loves to joke and pull pranks, tell wild stories and he’s a friend to all and makes everyone freely sharing smiles and hugs. The nurses, doctors, child life specialist and caregivers have become like family to us, and we couldn’t be more grateful for their part in our journey.
Kale’s cancer journey has been one of faith and joy. We’ve learned to take a day at a time, trust in God’s plan, and find the joy in every piece of the journey. Our family, friends, and the community have been so supportive and loving and it really powers Kale and our family. Kale is a remarkable kid, and his positive attitude and outlook along with the support we’ve received is definitely key to his recovery and continued health. Currently we have an end of treatment date set for July 9, 2021, the day after his 11th birthday. We will celebrate him big for all he has had to endure and go through, and we pray he stays in remission and can get back to the activities he loves but hasn’t been able to do because of his treatment.
Thank you for supporting Kale and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure.
