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.
On August 18th, 2005 I gave birth to the strongest, funniest, silliest, best 8lb baby boy named Wyatt. It was a day that changed our lives forever. I had a normal pregnancy with no big concerns until we met him. Wyatt was born with bilateral club feet and started the fight of his life at 20 hours old. He had his first set of casts on and they would be changed once a week for the next year. At 6 months old most children would be crawling but Wyatt was having his first of many surgeries.
Flash forward to 2 years old, we got ready for Wyatt’s very first big surgery where his feet had stainless steel pins put into his bones to make them stay where they should with a long recovery time.
At 4 years old, yet again, another surgery on his feet all while dealing with speech and hearing problems. At the age of 6, Wyatt was diagnosed with a mental disability that makes him act and behave a lot younger than he is.
He May of 2016, he had one more surgery on his left foot that went horribly wrong. His foot turned narcotic. He lived in hospital from May- November, being put to sleep every two days for debridement because it was just too painful for him to take sedation.
He finally got discharged to go home on the condition we bring him back for more debridement every two days. Finally, Wyatt was happy but it was very short lived.
On August 18th, wyatt’s 11 birthday, he was sent back to hospital with a blood infection from his pic line. That blood infection caused another bone infection. After that, we spent the next 2 years fighting infection after infection in his foot because we could ever find him shoes that didn’t rub his foot raw.
Through all of this Wyatt was still a little boy riding his bike and having fun playing outside. He hardly ever complained about pain unless it was really bad.
On September 18th, I saw something in my baby that wasn’t right. I took him to hospital thinking here we go again yet another infection somewhere in him. But it was so much worse than that. I demanded a blood test and 2 days later Wyatt’s father and I heard the words no parent ever wants to hear, “Your son has cancer.”
Wyatt was diagnosed with Acute Promyelocytic Leukemia (APML). Wyatt has had 4 central picc lines because of infections and breakage. With three bone marrow tests so far and more to come.
Wyatt’s type of Leuekamia is treated with all-trans retinoic acid (atra) 6 pills a day and Arsenic trioxide (yes arsenic). We travel to Macmaster Children’s Hospital everyday to receive treatment. Wyatt is in remission but we still battle infection in both his picc line and his foot on a regular basis.
The financial hardship we have had to endure since diagnosis has been huge. There are no words to describe how tough it can be.
Bryar was an infant upon diagnosis with Acute Myeloid Leukemia. It was September and we were enjoying the bliss of back to school with our older child who was just starting second grade.
We knew something wasn’t right when he kept getting sick. First the sniffles, then a cold followed by an ear infection. His hard pallet of his mouth extended and that’s when we knew something was wrong.
He has had 4 rounds of chemo, lots of procedures on bone marrow aspirations, and a MRI of the mouth area (it was a chloroma that made his hard pallet swell). As of now, the only developmental delay we have seen is he hasn’t shown interest in food very much. He still only really wants formula.
Our daughter is 7 1/2 and has stayed with my parents through this journey. My husband and I both quit our jobs to be at the hospital through Bryar’s treatment. Our family has been shattered because of this, but we have been as positive as we can be.
