Delainee has a beautiful spirit. She loves music, horses, art, books, writing, nature (we call her our tree hugger), and camping. She has a beautiful smile and a huge heart! She laughs most at her big brother!!
In early spring of 2013, she had cold symptoms and a fever that would not go away. Then we discovered why….acute lymphoblastic leukemia or ALL. She has had spinal taps, chemo, oral medications, sedations, MRIs, surgeries, and many hospitalizations. She has beat her dragons (we dont like the word remission) but we still have many appointments.
Our therapist has said that we are still living in trauma mode and also have some PSTD signs. She still worries at every sneeze or fever. She was left with anxiety issues, migraines, skin lupus snd other side effects. The skin lupus affects her being outside at times due to skin sensitivity.
Childhood cancer has changed everything. At the time of diagnosis, I had a teaching job overseas that i had to let go. Cancer with a child is hell. It caused problems in our family, took a toll on her sister and took both my daughters’ childhoods from them. Before cancer she wasnt afraid of anything, but now she is more reserved. Delainee is now older than her years…it’s not fair.
JJ has a heart of gold. He is extremely sweet, creative, fun and very brave. He is always giving me and my daughter compliments and is so caring. He loves playing outdoors (baseball with dad) and LOVES legos ! He really likes power rangers and transformers too.
In the spring of 2015, we noticed a few odd things. JJ had been having high fevers, petekia , was pale and lethargic. That’s when everything changed. He had Acute Lymphoblastic Leukemia or ALL. ALL has a long treatment and JJ has been through so much! He has had 27 lumbar punctures ( spinal chemo procedure), hair loss 2 times, takes steroids for 5 days every month (with many negative side effects), has oral chemo (a pill) every night, and chemo infusions every month. He has more to go through until the end of treatment in June 2018.
Childhood cancer has given us a new norm. Everything has to be planned around his treatment schedule and always the possibility of a fever. So we have to always be 1 hour away from a hospital. Plans are getting intruppted/ canceled and changed frequently due to unexpected fevers/ ER trips, etc. And siblings have to go last minute with family members or for sleep overs. It’s a juggling act!
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.
They need support, prayers, and encouragement!