I took Noak to his 6-year check-up in January of 2020. He has always been small but the pediatrician referred us to an endocrinologist to rule out that his slow growth was anything other than genetics.
A few weeks leading up to that appointment, we started noticing he was extremely tired, had lots of bruises, and completely stopped eating. We knew something wasn’t right. I knew they would do bloodwork at his appointment. We went on 3/4/2020, they did a psychical exam, determined his bone age, and did blood work. He was distraught and terrified of needles. They offered to let us come back another time since it was late. My gut was telling me to go through with it, no matter how much I wanted to turn around and take him out of there.
The next morning, at 8:30 AM, I received a call at work from the pediatrician telling me they received his results and it appears he has cancer from his bloodwork. We had to go pick him up from school that day and take him straight to the hospital to start treatment.
Our world completely changed that very moment with that one phone call, a day I will never, ever forget as long as I live.
Braden was diagnosed after getting an injury to his leg. Simple blood work turned into a nightmare within days when we learned of his cancer.
Braden has struggled with multiple aspects of treatment, having his port accessed has been one of the biggest struggles throughout. The fear and anxiety that come along with port access have really taken a toll on Braden.
One of the biggest obstacles we have had to overcome is faith. We put our child’s life in the hands of others each time he has a procedure and/or treatment and that is a huge test of our faith. The diagnosis has definitely brought us closer together as a family. We find support and strength in one another. No one could understand the hell we’ve gone through unless they have lived it. We are so close to the finish line but the fear and anxiety remain.
Oliver was diagnosed with ALL on February 26th, 2021. Before diagnosis, he had pale skin, petechiae, and bruising that was not going away.
We can’t be outdoors for more than 3 hours and haven’t seen some of our family in months. It isn’t safe for Oliver to be around a lot of people right now.
He has been such a trooper through all of this. He’s still staying as strong and outgoing as ever!
Ajooni was diagnosed with B-Cell Acute Lymphoblastic Leukaemia (ALL) in May 2018, 3 weeks before she turned 3.’It took quite a long time to diagnose; as in the beginning, doctors thought it was asthma, regular infections. Ajooni was given several courses of antibiotics for 6 months. She was unwell very frequently for 6 months before she got diagnosed. In the lead-up to her diagnosis, she had a swollen elbow due to fluid retention in the joint and a swollen liver and spleen. A blood test in A&E and then a bone marrow test revealed that she had leukemia.
Since her diagnosis, Ajooni has endured intense chemotherapy, blood transfusions, spinal taps, high-dose steroids, several lumbar punctures, and many more invasive and toxic interventions. Her energy levels have dipped due to muscle wastage. But she is still in good spirits and is bravely facing the other side effects of chemotherapy. She is moving forward but is facing anxiety issues. She is receiving counseling and support through school. We as parents have also been diagnosed with PTSD, we are taking medications for support.
Before her diagnosis, Ajooni had a fairly busy lifestyle. She was at nursery 5 full days a week as we were working parents. The diagnosis obviously changed ours & her life in a lot of ways forever. She was at home full time with me (mum) as her carer. She longs to be out and about, meet friends, spend time with her dad who is very busy working as I was not working from 2018-2020. She felt very stuck and frustrated at times. We pinned her hopes to the end of treatment. We have led a life in lockdown since 2018 so nothing changes for us post COVID. She is very happy that her (chest port) wiggly has come out and no more distasteful chemo meds. But upset that we haven’t been able to deliver all promises we made about doing fun things together at end of treatment. e.g a family holiday, end of treatment celebration, bell-ringing ceremony, etc.
Despite being so sick, she still found reasons to smile and laugh. Throughout the treatment, she tried to be a happy-go-lucky child. She constantly reminded me and dad to keep smiling numerous times a day.
In the summer of last year, Sam was feeling ill, pale and his nose was bleeding. He had a routine blood test done and we got a call saying he has Leukemia.
A few weeks before Christmas Sam had a serious 25-minute seizure and spent several days at Johns Hopkins ICU on a ventilator. He came home on Christmas Day without any major damage to his brain or organs, our Christmas miracle.
I had to leave my job to take care of Sam full time which puts a burden on the family finances. I have a 17-month-old daughter that has been affected by all the stress. Sam requires a lot of care and at times from the chemo he gets very moody and it takes time away from my daughter. Our lives have changed but we are a team and Sams’s treatment and cure is our team goal.
Sam is a very positive little boy! Seeing him go through his treatments is hard for our entire family. When Sam had the seizure we thought we were going to lose him and it changed our perspective on what matters to us. Getting the most out of each day with Sam is a joy and we are so blessed to have him in our lives. He said, “when I grow up I want to be a big boy doctor and help kids with cancer! I am confident he will reach that future goal!
Teags gets blood work done every summer because of her seizure disorder. In July of 2020, her blood work showed low WBC, so we started to wean her off of one seizure med and onto another, as the first known to suppress white blood cells and she has been on it for 4 years.
In August we re-tested and her blood counts were still low. So we saw hematology at our children’s hospital. I asked the doctor point blank “Is this leukemia?” He said I don’t believe so and she doesn’t have any symptoms. I think this is her marrow still recovering, but to redraw her blood in 2-4 weeks.
We did, and we got a call at 11pm on Friday from our pediatrician telling us we need to redo it Saturday morning. We did. They called us 4 hours later and said to pack our bags to go to our children’s hospital and to be prepared to stay. Once we got checked in, we were still unsure of her diagnosis until after the bone marrow aspiration.
She was a highly active child prior to diagnosis, she was biking 5-7 miles a day and swimming an average of 1200 yards in an hour during swim team. She has been so lucky to still be able to walk without much pain, but she is so limited compared to the past.
