Skylar was diagnosed with AML a month shy of her 16th birthday. She was just starting to learn to drive and looking forward to all the fun things that come with being 16, adventures with friends, looking for a part-time job, school, football games, and dances. Sadly she spent these years in the hospital.
Skylar’s symptoms came on very quickly. She complained of back pain, abdominal pain, tiredness, and had a low-grade fever. I took her to the ER and the leukemia was found on lab work. We didn’t know what type of leukemia until a bone marrow biopsy was performed.
Sky really struggled with losing her hair and all the changes her body was going through. It mentally and physically took a toll on her. Skylar, and her siblings, and of course my husband and I were very mentally and physically exhausting and well as financially draining.
Her diagnosis was a complete shock, she’s never ill. She is a two-time bone marrow recipient and was just able to have contact with her donor who donated to her both times!
Skylar is an amazing young lady, she is so strong and has handled her cancer diagnosis with courage and grace, I can’t even tell you all how proud I am of her, she is truly my hero! She’s is now in remission and trying to finish high school.
Jackson was diagnosed with AML on January 20, 2021. Leading up to his diagnosis he had bad nose bleeds that could not be stopped and severe pain in his legs.
After diagnosis, we were airlifted to St.Judes. Because of Covid, we are separated by five hours of driving. My healthy kids are in Springfield with my wife and I stay with Jackson in Memphis. The separation is hard!
He is such an amazing and brave kid. I have told him a hundred times I would trade places with him in an instant, but I would not make it look nearly as easy.
Amanda was diagnosed with AML in Sept 2020. She was treated with chemotherapy in the fall and received a Bone Marrow Transplant on December 31st. She was just discharged end of Feb from the hospital and will going outpatient with the BMT team for the first year, then back with the Leukemia team ongoing. Her younger sister Lydia was able to be her donor, with only a 25% chance of being the match. Both girls are amazing and would welcome the opportunity to document their journey.
Amanda was not having any symptoms and was just going to a routine physical at the end of August 2020 in order to get her school forms completed to play basketball. At this routine checkup, the doctor was checking for iron levels with teens having menstrual cycles and her levels came back very low. These results trigger more blood work which then took us to the oncologists. The doctor’s exams showed no signs of Leukemia physically on her body, however further tests and a bone marrow biopsy did confirm AML.
She was admitted immediately for a dual-port to be embedded in her chest and started chemotherapy shortly after. A very surprising catch and quick transition into cancer care. Unfortunately, her type of AML has an abnormality which only a bone marrow transplant would give her the best chance to beat this cancer. Her AML with 5Q depletion is a notorious relapse cancer and just very blessed doing so well at the moment.
She is not able to go to any public places at the moment due to her immune system being so compromised from the BMT. As you can imagine a challenge for a teenage girl to lose all her hair but she has a good attitude and love the pic with the boxing gloves and outdoor nature shots.
She would be impatient for weeks with chemotherapy and with the BMT was in for over 10 weeks (admitted Dec 22nd so spent the holidays in the hospital) If not impatient we got to outpatient appts at the clinic several days a week. The cancer has not only stopped all school activities and even schooling during BMT, but it has also consumed our way of living between appts and at-home regimens and medications. She is not even allowed to touch her pets due to the risk of fungal infections.
Braelyn was diagnosed with AML on May 30, 2020. She was misdiagnosed with Bell’s Palsy due to right side facial paralysis, Then she just got sicker and I knew something wasn’t right so I took her into the ER.
Braelyn spent her first 13 days on a ventilator and 37 days in the PICU. She has now gone through 4 rounds of chemo. She had dialysis in the beginning but has improved enough that she doesn’t need dialysis. Her kidneys are managed with medicine and diet.
We, unfortunately, live about 2 hours from the hospital so seeing her brother and dad has been very limited and mostly just through FaceTime so it has been very hard.
Cancer has changed our life in a lot of ways but nothing that any other family probably doesn’t experience. Our biggest change is diet and learning what things she can eat. There are a lot of things have to be careful about. We also have to limit public places due to her being able to get sick so easily. We haven’t been out of the hospital much in the last 6 months so we haven’t had to see much change in our everyday life just yet.
Bristol is a very energetic 4-year-old. Even during chemo, she was always running around, playing with the doctors and nurses. She is big into pretend play at the moment and is really enjoying the Barbie Dream House Santa brought her for Christmas last year. She also enjoys doing Legos, riding her bike, swinging at the playground, and playing hide and seek. She learned how to read during her time in the hospital, and also got interested in iPad games and Youtube videos. She loves all things Disney, especially Minnie Mouse. She also loves helping me (mom) take care of her new baby brother.
Bristol had been having constant infections for several months last spring and was taking all kinds of antibiotics, which didn’t seem to be helping. She had a lot of bruising on her legs, her eyes were puffy, she was pale, lethargic, and complaining of severe ear pain. An ENT ordered blood work thinking she might have mono. Where her labs came back, the results showed that she had leukemia. Further review of the specimens revealed she had AML.
Bristol received 4 rounds of in-patient chemotherapy over the course of 5 months. Because of her intensive treatment, I (mom) had to quit my job to become her full-time caregiver, and Bristol is no longer attending school.
We do believe she’s cured of this, and this will be it as far as her cancer story takes us.
We thought Jude had allergies until he started to get extremely lethargic. When we did his bloodwork, we found Leukemia cells in his body. He has 3 rounds of intensive chemo and a bone marrow transplant coming up next month.
Cancer changed our lives forever. We have put our jobs and lives on hold for six months and we will constantly live in fear that it can come back.
