“Our worst nightmare came true on December 20, 2017 just four days before Christmas; our 12-year-old daughter had Pre B Cell Acute Lymphoblastic Leukemia. How did we end up here?!? Cancer was not something on our radar at that moment in time. Kaylyn had been having lots of bone pain and we were going to different doctors trying to get some answers when we finally went to a see a rheumatologist on December 19, 2017. He suggested we do a CBC to get a better picture of what was going on, and within 24 hours he called me with the results and told me I needed to take her to the emergency center at MD Anderson Cancer Hospital as soon as possible. We were admitted to the hospital through the emergency department at MD Anderson in Houston, Texas for observation. Within 12 hours we were woken up to news no parent is ever prepared to hear ‘I am sorry, but the lab results came back and your daughter has leukemia.’
That morning our girl was taken back to start the battle of her life, literally. Within the first 12 hours she had already received her first dose of chemotherapy and had surgery to place her picc line.
I remember so vividly sitting in the waiting room thinking this is just a bad dream and we would wake up! We cried and prayed and begged God that morning to hear us and give us the strength we needed to hold it together for our younger son.
We spent 71 long emotional days enduring the hell that the chemo puts your body through before we learned her leukemia was refractory and was not responding to the chemotherapies.
Our doctor told us she was a candidate for a new therapy called CAR T immunotherapy which was just approved in Aug of 2017 for ALL. Kaylyn underwent CAR T and did remarkably. We had some bumps in the road, but overall she was a complete champion. We were beyond scared after reading all the possible side effects but we knew this was our only hope!
The day we got the results she was minimal residual disease (MRD) – we felt like we had won the lottery, for once in a long time we actually were on the right path. With the results we knew she was a candidate for a bone marrow transplant, and transplant was our only option to give her the best possible long term survival rate.
We searched for weeks for a match on the bone marrow registry, and came up empty handed. We felt hopeless. How could we come this far and not have any matches?!? Kaylyn and her brother are both adopted so we could not even do a half match!! That call was just as devastating as hearing the word cancer. We decided at that time after speaking with the transplant team they would do a stem cell transplant from a donor cord blood. On August 6, 2018 after 10 days of the highest dose of chemo and 8 rounds of total body irradiation our warrior received her new lease on life! I felt hopeless and devastated with the possibility of not having a match.
We were in the hospital for transplant 39 days and it was rough. There are no words to explain how hard this process is on the body let alone to physically watch your child suffering. She had severe migraines, mouth sores, mucositis from her mouth to her bottom, constant vomiting, diarrhea, elevated heart rate of 140-140 for 6 plus months, unable to walk, eat, swallow, hair loss, weight gain, and bone pain. She was discharged September 4, 2018 and we headed to our apartment with more medicine than any one person should have to take let alone a 12-year-old child.
We were home barely 22 days and she ended up in the emergency center with high fever and thus started our new journey of graft vs host disease! That stay we were inpatient for 86 days due to complications from transplant. We were discharged in time to spend Christmas at our apartment with her brother and grandma, but after 10 days home she developed sepsis and we ended up back in the hospital in ICU. We thoroughly enjoyed being out of the hospital for the 10 days. It was really overwhelming for me to do all the work and care that a full team does while inpatient, but I made it work with all the meds and appointments. Sometimes you feel unequipped to handle the daily task and it falls on me. We live apart from her Dad and brother because we have to be in the medical center for her treatments.
As of today we are still here and just taking it one day and moment at a time. Over the last year we have been in the hospital more days than out. She has been diagnosed with chronic graft vs host disease as well as avascular necrosis of most of her major joints because of the high dose steroids she received to treat her graft vs host. We have since learned she has steroid refractory GVHD so it didn’t respond to the steroids. She has been on multiple therapies and as of today we are still trying to battle this new beast! We were faced with an impossible choice and we would choose it again. This road has been so difficult, but at the end of the day our girl is alive!
Her life might look differently now and our family will never be the same after this, but we are thankful everyday! We have grown as a family and even when things seem too difficult to deal with we keep on going because we have faith and we are #kaystrong!”
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