Imagine Spending 278 Days in a Hospital

Meet Kaysan, 5 Years Old, diagnosed with Acute Myeloid Leukemia

On February 9th 2017, 3 year old Kaysan was sadly diagnosed with Acute Myeloid Leukemia (AML): A type of cancer in which the bone marrow makes a large number of abnormal blood cells. Common symptoms of this cancer include fever, anemia, bleeding and/or bruising, recurrent infections, bone and joint pain, and abdominal pain. Chemotherapy is the primary form of treatment for this disease.

Early on in his treatment, Kaysan’s family learned that he would need a bone marrow transplant. It was determined that Ameer’s cells would be used as a half match related donor for Kaysan’s transplant. The transplant sadly rejected, and the family had to start back at square one. This news was very saddening for Kaysan’s family. “Our worst fears are quickly becoming our reality once again.”-Brittany. Kaysan’s family geared up for a second attempt of a transplant. Again, Ameer’s cells would be used as a half match related donor. Although the family felt very saddened as a result of the first transplant rejecting, they were still very hopeful that the next transplant would be successful. Again, Ameer’s cells would be used as a half match related donor. Although the family felt very saddened as a result of the first transplant rejecting, they were still very hopeful that the next transplant would be successful. 

Unfortunately, they quickly learned that his body has once again rejected the 2^nd transplant. Hearing this news was in fact devastating for the family.  Even still, Kaysan’s parents remained hopeful and held on to any optimism they could. At this point, they were hoping and praying for a donor to be matched to their little boy. “We will keep fighting this beast & won’t give up until we get to take our smiling boy home.” – Brittany

Shortly after Kaysan’s 2nd transplant failed, Brittany and Ameer learned there was a donor match for Kaysan: An unrelated, 31 year old male from Spain. On August 23rd 2017, Kaysan underwent yet another bone marrow transplant. The next several grueling weeks would consist of hoping and praying this 3rd attempt would be successful. On September 9th 2017, Kaysan and his parents received great news: The transplant was proving to be successful! As Kaysan continued to recover and improve over the course of several months, the family was absolutely thrilled to finally go home in November of 2017. Kaysan was admitted for 192 days in the hospital, 134 days past his estimated discharge date, 83 days since his 3rd and final transplant, and 278 days total since his diagnosis. Since little Kaysan was diagnosed, he and his family have endured an exhausting and taxing journey with numerous setbacks. However, despite the constant obstacles, Kaysan’s parents remained courageous.

“A year ago, we were losing hope as we prepped Kaysan for his second bone marrow transplant…The second transplant that we would later find out failed. But we never stopped fighting. We never gave up. Now here we are… home & watching Kaysan enjoy life as a ‘normal’ kid. He’s even going to start karate soon! We couldn’t have done it without the support we had. So many people want to help & it really warms your heart while you’re in such a dark place. There’s not enough thank you’s in the world.  – Brittany

Our team here at Keaton’s Child Cancer Alliance has had the honor of walking alongside this family since Kaysan was sadly diagnosed. Our relationship with this family began when we delivered our signature ‘Hope Chest’ to Kaysan and his family at the hospital. Kaysan’s little brother, Zyan, was just a baby at the time Kaysan was diagnosed. Zyan was basically raised in the hospital almost the first year and a half of his life. Our Director of Family Navigator, Jessica Alonso, brought the family a baby bath tub and bath materials so that Zyan’s basic needs were being met during their time spent in the hospital. When Brittany and Ameer needed to shave Kaysan’s hair due to the effects of chemotherapy, our Family Navigators connected the family to Super Cuts who ultimately met the family in their hospital room to shave Kaysan’s head. Along with a financial grant, KCCA has and will continue to support the family with any needs they may have whether it’s providing gas cards for their continuous commuting to and from San Francisco from Sacramento for Kaysan’s treatment, or grocery food cards so that they could have access to nutritious meal options during long hospital stays. Over the course of his treatment, our KCCA Family Navigators had the pleasure of further getting to know the family at several KCCA events including a ‘Paint Nite’ for KCCA parents, our annual family Funderland event, and at one of our Signature Saint Baldrick’s head shaving events at Westfield Galleria.

“Thank you so much for all you do. You guys have been a guiding light in a very long dark tunnel. We feel so lucky to be where we are now & are so thankful for your help & support along the way.”  – Brittany

Today, we are happy to say that Kaysan is doing very well and is getting ready to celebrate a big milestone: one year post transplant on August 23rd. Brittany and Ameer could not be happier with how Kaysan has been doing. Kaysan was recently just cleared to go engage in outdoor water play so his family is hoping to plan a trip to the beach or the river soon. While Kaysan’s family couldn’t be happier that he is well on his way to recovery, there are still many struggles Kaysan’s family faces. These struggles include vehicle issues due to countless trips to and from the bay area from Sacramento for Kaysan’s treatment, difficulty getting back to work, and dealing with anxiety. Keaton’s Child Cancer Alliance is currently working with Kaysan’s family to address car maintenance issues in order to support the family’s transition into their ‘new normal.’ Here at KCCA, we understand that survivorship can include a new set of hardships which is why our relationship with a KCCA family does not include an expiration date. Our organization is truly grateful to be a part of this amazing family’s life, and we look forward to seeing Kaysan progress and move forward in the future.

It’s been a terrifying, long dark journey… but highlighted by the love & generosity of strangers & family alike. I hope that every kid fighting knows that they are not alone & they should never give up hope.  – Brittany