Justin was 3½ when we noticed that his cold-like symptoms were more intense than usual. When the symptoms started, they seemed like he was just having a really bad cold. A trip to the walk-in clinic had him diagnosed with strep throat and a prescription for antibiotics. Even when he was sick, though, he was still happy, sweet and energetic. This time, things were different. He would cling to my mom all day, just sitting on her lap with no appetite and very lethargic. In the evenings, he just wanted to snuggle and sleep. I took him to the pediatrician’s office and will be forever thankful for the small miracle that happened that day.
A different doctor was covering for his regular pediatrician. This gentleman, due to his own health issues didn’t have his own clinic so he floated, covering for other doctors. Within minutes, he ascertained the severity and urgency of the situation and weaved some magic. When he was unable to procure immediate bloodwork for Justin, he contacted a nearby hospital and made arrangements for us to be immediately seen by the on-call pediatrician. He had obviously provided his assessment of Justin, so even though I declined the offer of an ambulance, his actions resulted in us being rushed to a room where tests were immediately run. I’ll never forget all the EMTs, doctors and nurses who dropped by Justin’s room to offer us words of support and comfort. In fact, one nurse apologized that since the gift shop was closed, the only toy they could safely offer was the one provided to young burn victims from an elderly lady who made them by hand (we still have that little woven teddy bear with the green shirt). Throughout this experience, we still didn’t know Justin’s diagnosis but were reassured that they were doing everything they could to make him comfortable. After a couple of hours, the doctor advised us that they suspected Justin was suffering one of two diagnoses, but were going to rush him to Sick Kids for further observation.
After that things are a blur. I do remember a young doctor with a soft, lilting Irish accent breaking the news of his diagnosis to us (I’m ashamed to admit that I didn’t even know what leukemia was) and that she would be giving us a lot of information and would repeat it again and again because we probably wouldn’t remember a word of it. Truer words were never spoken…all I remember is “your son has leukemia”. I can’t remember a single detail of the information itself; just a warning that she would be repeating them.
Justin spent the next two weeks at Sick Kids. Since his port surgery wouldn’t be completed until nearly the end of his stay, he had blood drawn from his arms every 4 hours, around the clock, day and night. His little arms were black and blue. On the second or third day, my husband shared an epiphany. He told Justin that it was okay to cry, but that he must always thank the nurse. His logic was simple – we say thank you to the people who are trying to help us. Even though it hurt, he wanted to emphasize to Justin that he should be thankful to the people who are trying to help him. Justin was amazing. No matter the time (midnight…4 am….8pm) he would always look at the nurse and say ‘Thank you’. His little voice broke our heart (and a couple of times, a nurse’s too), but he would say it without fail. I truly think this changed Justin’s attitude about his treatment over the next 3+ years.
Justin was always a content and happy baby and his approach to his ongoing treatments wasn’t any different. He never complained and only once ever asked ‘why is this happening to me?’ (It was Halloween and less than an hour before he was going trick-or-treating, I received a call from Sick Kids and was told Justin was neutropenic. He was already dressed up and just hid silently under the bedcovers.) Every morning, when he saw the other kids on the street walk to school, his nose would be pressed against the window, watching them longingly (“Mommy, when can I go to school?”) When he started experiencing issues with his hip joints, he would literally walk as strong as he could in front of us, and collapse onto the floor as soon as he was out-of-sight. He would then put up his arm to reassure us ‘don’t worry, I’m fine’.
One of my proudest moments as his Mom was during one of his trips to Sick Kids. There was a tiny, shy girl who ducked behind her Mom’s leg as soon as she saw us. All we could see was half of her face peeking out. Justin waved to her and said ‘Hi’. Her Mom encouraged her to smile back but without luck. This special little girl was hiding half of her face because of large pink-coloured tumor. When her Mom moved and we finally saw her, 4-year old Justin turned to me and said, “Mommy, look at that beautiful little girl. Why isn’t she saying hi?” Her little face broke out into the biggest, most beautiful smile I have ever seen and she waved back. Her Mom’s face crumpled into happy tears as she whispered to me that this was the first time someone had called her daughter ‘beautiful’.
Like anyone else facing this type of challenge, there are good days and not-so-good days. My mantra quickly became ‘Now one foot, now the other’. It wasn’t a matter of two steps forward, one back but more of putting our heads down and to just keep moving. Since his treatment has ended, Justin is facing learning challenges. Similar to the anecdotal information shared by other parents of ALL-diagnosed children, he has been diagnosed with a learning disability. Fortunately he is receiving a lot of support from his teachers and school’s administration. Justin is currently in remission.
On April 16th this past Easter Sunday, sweet little 3 year old Dakota had to be taken to the emergency room. She had a nose bleed that wouldn’t stop and unexplained bruising that wouldn’t go away. Her blood test revealed she was at a critical level and needed several blood and platelette transfusions. They had to perform a bone marrow biopsy on her which revealed that she has B-cell Acute Lymphoblastic Leukemia.
Dakota has always been a very active, spunky 3yr old who loves her family, friends, and 2 doggies. She loves to dance, sing, and play outside. Now she will be undergoing a 2.5 year long journey to fight for her life. According to The American Cancer Society, ALL is a cancer that starts from the early version of white blood cells in the bone marrow; they invade the blood and can spread to other parts of the body. The term “acute” means the leukemia can progress quickly and would probably be fatal within a few months. This means that, without treatment, Dakota would only have a few months to live.
Dakota is facing 2.5 years of intense chemotherapy treatments. These treatments will temporarily destroy her immune system, something no child should ever experience. She will no longer be able to go to seaworld, splash pads, or have a normal play date with any of her best friends. She will endure a rigorous plan of chemotherapy and steroids, and every fever will result in checking into the hospital until the fever has been gone for 24 hours.
This news comes at an already tough time financially. Dakota’s mom just started a new job, and her mom & dad were happy they could afford to add Dakota to his health insurance once open enrollment starts. Sadly, with Dakota’s diagosis, her mom had to quit her job to be home and care for Dakota. So, they have this long road ahead of them with no health insurance for meds & treatment.
Dylan is a happy, smart and silly two year old and twin brother to Tyler. He always has a smile on his face and is one of the sweetest boys you’ll ever meet. Dylan has always been a thinker, and likes to take his toys apart to “see how they work”. This is where the nickname Dylan the Destroyer comes from.
On January 18, 2017, Dylan was diagnosed with Acute Lymophblastic Leukemia, Pre-B. His team of doctors quickly came up with an aggressive treatment plan, surgically implanted a medical port, and started chemotherapy the very next day. In addition to chemo, he has had numerous admissions to Children’s Hospital since his diagnosis, ranging from 4 to 10 day stays. He has undergone several spinal taps, multiple blood transfusions and bone marrow tests. His initial bone marrow test classified him as a Very High Risk patient.
Dylan is doing very well and his body has been receptive to the treatments/procedures performed thus far. However, he has a long road to recovery ahead, roughly 3 years.
As a result of Dylan’s diagnosis, we were required to get a zygosity test for the boys. This DNA test revealed that Dylan and Tyler are in fact identical twins. What this will mean for Tyler is that his probability (over being a fraternal twin) of being diagnosed with Leukemia is now greater. Tyler is showing no signs of Leukemia, but it is recommended he be tested every three months to monitor this.
Dylan wants everyone to know how strong he is and that we WILL beat this! Leukemia will NOT win! Dylan will DESTROY cancer!
Rylee is super goofy and fun. She laughs most with her brother and sister. Rylee like to be tickeled. She loves the beach and babies!! She also loves to swim in pools.
Last summer, Rylee was irritable, had loss of appetite, swollen eyes, and peticial rash. She was diagnosed with B cell Acute Lymphocytic Leukemia with a rare gene mutation. She has had multiple surgeries and sedations along with many months spent in the hospital. Rylee is physical and cognitively behind in many areas due to her cancer diagnosis. Rylee had her final lumbar puncture last month. She did really great and made it look like a “piece of cake”! This is the start of her final cycle of treatment on the standard high/ very high risk COG protocol for B-cell ALL. She will still receive nightly chemo at home and some clinic visits for Iv chemotherapy through her port. She will continue having the monthly 5 day, 10 doses of the dreaded steroids, which completely throw her out of wack.
Rylee’s oncology team is nothing short of amazing. The doctors, nurses, and nurse practitioner, and social worker have a very special place in our hearts. Rylee is so trusting of her onco team because they know her so well. They make our clinic trips less stressful because to Rylee it’s like going to visit family. We truly couldn’t have asked for better people to provide her care.
It’s been a very long tough road, many ups and downs. Our family struggles financially, and although both my husband and I work it’s a struggle to keep up with all the bills. We try to live as normal as possible but we have a constant fear of the “r” word due to her being so high risk. We can see a light at the end of the tunnel and we are so grateful for all the love and support and especially for our friends and family who have stuck by us. We are fortunate enough to have a wonderful community, it really does take a village.
Dylan is the happiest kid we know! He LOVES legos and building. He has a twin brother and a younger one that do everything together. He’s become a super swimmer this year and is basically a pretty typical 6 year old boy interest and activity wise.
His resilience to all of this has been incredible to witness. On August 20th, 2014, Dylan was diagnosed with Leukemia. In the following days we were told that he specifically had pre-B cell Acute Lymphoblastic Leukemia(ALL). He spent the following 8 months in intense frontline treatment, which consisted of multiple blood transfusions and many types of chemo given orally, intravenously, and intrathecally. At the end of April 2015, he started the maintenance phase of his treatment. This has consisted of 12 week cycles of chemotherapy, some given daily, weekly, monthly, and once a cycle. Dylan will take his last dose of chemo on the night of October 24, 2017 and we are VERY excited for that day.
There have been many bumps along the road so far, but many more good times than bad. We have had an unbelievable amount of support from family, friends, teachers, and co-workers since that horrible day in August 2014, and will be forever grateful.
Joshua “JoJo” before diagnosis was always very healthy, rarely sick, energetic, typical little boy. Late in the summer of 2016, he began have spontaneous unexplained fevers and not sleeping well at night. This led to sudden pain in his arm that didn’t go away. We took him to the ER for X-rays to rule out a broken arm and we are so grateful that the ER doctor had the intuition to check his blood work. We were referred to a hematologist for abnormal labs- and that same day found out that he had leukemia.
He is the strongest child I have ever known. Nearly every appointment, every “poke”, every procedure – he meets with a positive attitude and optimistic outlook. Our nurses and doctors all tell us this is most unusual for a 3 year old.
He is on a 3 year treatment protocol. We are almost 1 year in-the first few months we’re definitely the hardest on all of us. We spent most of that time in the hospital and away from JoJos 3 siblings and dad. It was hard and still remains tough for our family. However, We are so grateful for all of our medical team and all of those praying for him. His favorite bible verse is Joshua 1:9- Be Strong and courageous. Do not be afraid or dismayed for the Lord your God is with you wherever you go.
