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.
Jaxson is one of the happiest little boys that I have ever met. He is always playing, laughing, and running wild like a typical (almost) 2 year old little boy. He has grown used to the hospital lifestyle. He loves his nurses and playing with the friends he has made that are going through similar situations. Outside of the hospital, Jaxson loves the outdoors. He loves animals, especially dogs and cats. Jaxson also loves music and anything that has water to play in.
Jaxson had low platelets at birth. After testing for many different conditions, Jaxson was diagnosed with Myelodysplastic Syndrome (MDS) at 18 months old. He was scheduled for a bone marrow transplant at the end of January. Unfortunately, his bone marrow biopsy right before transplant showed that the MDS had turned into Acute Myeloid Leukemia (AML). He was diagnosed with AML at 20 months old.
In January, he had his central line placed and had his first round of chemo. He spent 10 days on chemo and 34 total days in the hospital. Jaxson went into remission after the first round of chemo! He had another round of chemo in March as a preventative measure while his donor was preparing to donate for transplant. He spent 8 days on chemo and 26 days in the hospital. Jaxson is getting to spend 4 weeks at home. We will be admitted to the hospital again at the end of April to start chemo, and Jaxson will have his bone marrow transplant in the spring.
Jaxson’s MDS has played a role in our lives since the day he was born. It was still a huge shock when we learned that it progressed into AML even though our doctors had warned us that this could happen. I had to take a leave of absence from teaching to care for Jaxson during his treatments. It can be trying, because my husband and family are an hour and a half away from the hospital, but we have an amazing support system to help us. Jaxson is a fighter. He has gone through this at such a young age, but he has taken every step so far like a champion.
Hattie was diagnosed with Acute Myeloid Leukemia at 9 months old, still just a baby. She has known hospital life for half of her life so far. We have three dogs and she loves them. She loves dogs. She loves music and musical instruments. She watches the movies Moana, Secret Life of Pets, and Coco over and over. She is sassy. She makes hilarious facial expressions. She is very smart and stubborn!
She has had chemotherapy, total body irradiation and a bone marrow transplant. She experiences organ and kidney failure and spent 9 days in the PICU and 3 on a ventilator. It was so scary. We almost lost her.
Hattie just completed a bone marrow transplant on October 2nd and will be on strict restrictions for a year. She definitely cannot be around crowds or kids. It’s a very secluded lifestyle for her. Neither of us (mom and dad) are working at the moment. We had to relocate to Nashville for the transplant and recovery. We can’t go out and do social things or anything around other children. We have to stay pretty secluded.
Hattie has fought so hard and she pulled through. She is amazing!
Isabelle is self-assured at a personal level, a bit more reserved outside of her contexts. She never turns down an opportunity to perform. She loves children, especially her nieces and nephews, and has a love of cooking and baking. Isabelle is neat, organized and efficient, at the same time very dramatic, and very dedicated to her music (harp, voice). Her family knows well her sharp, dry sense of humor in the midst of her lavish displays of affection. She loves being a girl and all that entails–jewelry, make-up, pretty clothes, unicorns, and lots of pink. Isabelle loves animals, and it was her special delight, in light of her difficult year, to choose her own special kitty, an exotic short-hair whom she named Nanette.
In January of last year, Isabelle was developing sores under her arm and running a low-grade temperature when we left for her first college audition and a vocal competition. She did not improve and when we arrived home, her doctors suggested she be taken to the ER where her lab work revealed a critically low white blood count. A bone marrow biopsy was recommended, which revealed Acute Myeloid Leukemia or AML.
Isabelle was treated with 4 rounds of chemotherapy and was mostly in the hospital from Jan-June 1, 2018. She is now being followed monthly by her oncologist. We are so happy to have our daughter doing so well, and are enjoying life one day at a time. There are on-going concerns and related financial strains; however, we are so blessed and thankful that we have come so far. Isabelle is in remission and has returned to an active lifestyle with music and on-line college classes.
Cancer drastically changed our life during Isabelle’s treatment as I remained away from home in the hospital with my daughter, while my son and husband managed home, work and school as best as they were able. The fears and unknown affected every member of our family, though we had wonderful support from family, our church, and friends during the critical times. Isabelle was very strong throughout her treatment. She kept her harp in the hospital room and when able played for staff and other patients. Our family fell behind with plans, finances, and home maintenance across 2018, but are reestablishing home life, church, and musical activities much as before interspersed with doctor appointments. Cancer is never far from our thoughts as a reality, but it is weighed in the balance of God’s good providence to us.
Isabelle has not abandoned her dreams of majoring in performance and is looking forward to being on the college campus in February if she continues to stay healthy. She enjoyed jumping right into preparations for the musical Suessical after her hospitalization and is excited to be singing the role of Barbarina in Mozart’s The Marriage of Figaro in January.
Tomariyah is a princess all the way. She loves playing with make up and dressing up and showing off her model poses. She loves acting out the Disney character Doc McStuffins after being in the hospital so much. I’m sure she aspires to be a nurse or doctor.
Tomariyah was diagnosed with Acute Myeloid Leukemia on November 25 of 2017. Leading up to her diagnosis, she was very tired all the time and bruising easily. She just wasn’t herself at all. She was very cranky when normally she’s an energetic, sassy princess. Tomariyah has been through very aggressive chemotherapy treatments. A lot of times we would have to stay in the hospital for 12 consecutive days.
Cancer has changed many things in our lives. Tomariyah’s brother ( 7) worried about her a lot and is now very overprotective of his little sister.
We are happy to report that as of now, Tomariyah has been in remission since January of 2018.
