Erika was born a fighter. Having an extra chromosome, I believe, does that to you. She had some difficulties right after she was born. She had to have surgery to repair a duodenal stenosis and had to be tube fed for a while. She overcame it all. She took her time learning to walk and talk, but she accomplished that too. She attended daycare and preschool and now school along with her typical peers.
Erika is a sassy little diva. She loves to dance and sing and she loves to be on stage. She still loves Elsa from Frozen, but she also loves Teen Beach Movie and High School Musical. She’s fond of Daniel Tiger Neighborhood and Sofia the first. She loves playdoh and painting and coloring as well. She likes to listen to Kidz Bop. She also enjoys playing with her dolls. She enjoys going to the park and swimming. She loves to read and play games like Mario Kart.
We were devastated when she was diagnosed with leukemia on May 27, 2017. We live in Valdosta and we have to travel to Jacksonville (2 hour drive) frequently for her treatments, blood and platelet transfusions, etc. So far she’s had to be hospitalized twice for fevers and once for seizure-like activity. All of her chemo is done in Jacksonville. We are getting ready to enter the next phase of her treatment. She will need inpatient chemo for 2-4 days.
We have gas and now car maintenance expenses because our car needs a new set of tires. We are glad to have the Ronald McDonald House helping us with lodging though. Our lives have completely changed and I am unable to work because I’m caring for my daughter, but I wouldn’t change it for anything.
Because I’m traveling so much with Erika, I have missed out on spending time with our other two kids. I feel like I’m disconnected with my teenager (more so than normal), and my baby girl is feeling left out, but, I try to make it up when I’m home and try to spend time with them when dad is home. Erika has only been able to go to school a handful of times since school started the beginning of August, she’s either been in chemo or too weak to participate. We also have to watch her ANC numbers. If they are below 1000 we have to keep her at home due to her extreme susceptibility to getting sick.
Even with all we have been though, I believe that she will overcome this because she was born a fighter!
Grace began treatment for ALL on 5/23/2015 and ended on 9/17/2017. She had 4 major surgeries, and numerous inpatient stays. Both Christmases, she was inpatient or very ill. All holidays were spent caring for her. We are so fortunate for her to be here today and thank everyone that helped us during this horrible journey. We made so many new lifelong friends. Good can always come from tragedy.
Thees photos captured the celebration of the end of the worst 2 and half years of our life! It captured Grace taking her last dose of chemo. We can’t even begin to thank you!
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!
JJ is very proud to be a cancer fighter and is proud of his beads of courage that he has earned for each step of the journey. He loves talking to people about what each bead means and what he has been through. He is very strong and courageous. He, as well as our whole family, has been leaning on our faith and trust in God during this long and tough journey!
On August 6th, 2015 our son William was diagnosed with T-cell ALL which was an incredible shock to our family. We thought he had a virus or a bad case of the flu when we brought him into the hospital that day. The diagnosis of cancer was heartbreaking and scary, he was only 2 years old and it seemed impossible that he could have cancer. It was awful to see his physical decline. He stopped walking completely and suffered with terrible side effects from treatment along with numerous other complications. Throughout it all he enjoyed making us laugh and his spirit remained strong. Even on the days that he could barely move he would fly his planes and ask to watch his favourite shows. He taught us a lot about perseverance, positive attitude and living moment by moment.
After seven months of chemo, William still had detectable leukemia and could no longer proceed on the treatment plan for his type of disease. He needed a bone marrow transplant. Thankfully we had completed the blood work for matching and knew that his big brother Edward, who was 5 years old at the time, was a perfect match. On April 1, 2016 William had his transplant. We anxiously waited for the new cells to do their work and about 45 days post transplant we finally received the news that there was no detectable leukemia in his bone marrow. It was around this time that the kids were finally able to see each other and William was discharged from the hospital. The first few months home was a challenge as I learned to do his nursing care. Every day he got stronger and we could start going on outings to the park and other public places.
Our boys are inseparable and play together every possible moment. William is now 18 months post transplant and recently started Junior Kindergarten, a milestone we thought we would never see. There will be long term health challenges but he is happy, active and brings joy to everyone around him.
We are so thankful to have the opportunity to receive these beautiful family photos. They exhibit fun, strength and joy which exactly describes our life.
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.