Gionni is a very humorous child who absolutely adores Legos. He likes to make jokes and make other people laugh. He’s also barely ever sits still! He’s constantly on the go!
Gionni was diagnosed with Leukemia June 6, 2016 four days after his fourth birthday. He began with swollen lymph nodes on April 26th, 2016 and we had consistent visits with our pediatrician and mulitple blood draws done between April and the end of May when he was finally referred to see oncology. His first oncology appointment was on his birthday.
Through treatment, Gionni has had several admissions for neutropenia which resulted in blood transfusions but other than that he has been doing fabulous in the final stage of his treatment. As a family, we have struggled with many things: guilt, choices, money, treatment options, support, and loss of friends.
To say that Gionni’s diagnosis changed my life would be such an infringement on the actuality of how this has completely, and utterly transposed who I am as a person. Gionni’s diagnosis has made me a better person, mother, wife, and daughter. Gionni’s diagnosis has also created a new me, one who is engaged for the parents who have to deal with childhood cancer and all of its shortcomings.
Samuel loves animals. He is completely obsessed with them. He loves gorillas the most. He loves just playing and being around his brother.
Samuel was diagnosed with Acute Lymphoblastic Leukemia in July of 2017. He had all of the classic symptoms show up in just a weeks time; Fever, bruises, fatigue, swelling, bloating, and bone pain.
He has had many lumbar punctures, lots of hospital stays, and had pneumonia and mono twice. He had a persistent cough for an entire year and tends to tire easily.
Samuel’s cancer diagnosis has completely changed our lives. We have had to learn to live a new normal. We do things a little differently and try to keep him as healthy as possible to avoid hospital stays. Planning trips or events are always a challenge because we never know what will happen. We have learned to truly live a day at a time.
Freddie is really amazing. He is a fighter. He is strong and does not give up easily. He is not a people pleaser but he loves to make you smile. He is outgoing and so smart. He loves music, really loves music. He could listen and dance all day. He loves trains, trucks, and cars. He is also a big movie buff. He loves high energy films and movies with lots of singing and musicals. He loves to be outside. Spending time with his big sisters is his favoirte and their hugs have become so intense when they see each other.
Freddie also has down syndrome. Kids with DS are 20% more likely to develop Leukemia, than kids without DS. Freddie had a bad cold and high fever the weeks prior to diagnosis. He also had tiny little bruises and petechiae on his body. I asked the doctor to run bloodwork to check for it.
Freddie’s cancer also shows that he has a mutation, called Philadelphia-like chromosome. Even though it makes him high risk, the fact that he has down syndrome allows for him to be treated on the standard risk protocol.
Freddie has two big sisters, Clementine is 12 and Olive is 8. They have been spending a lot of time with their Pop-Pop and GiGi while Freddie is in the hospital. Freddie spent 56 days in the hospital during the induction phase, due to him catching 3 viruses while inpatient. He then spent 10 days inpatient for an infected g tube, and is currently inpatient for 56 days during the interim maintenance phase. I spend most of the days at the hospital with him and my husband (their dad) is a firefighter/paramedic and works 24/48 hour shifts. We spend a lot of time away from one another.
Holley was diagnosed October 19th, 2016 with High-Risk Ph-like Pre B-cell Leukemia. She relapsed November 7th, 2018. She had a bone marrow transplant on March 22, 2019 and also had to do radiation for the first time. She has been doing well now.
The first time Holley got diagnosed she took treatment very hard and was in and out of the hospital like crazy. She probably spent more of her days inpatient then being out of the hospital.
When Holley relapsed she did very well and took everything like a champ. We found out that Holley will have to have surgery on both her legs due to chemo and a disease that is called Charcot–Marie–Tooth, a disease that affects the hands and legs and can cripple her if she does not have the surgery.
With Holley having cancer this has affected our family in so many ways- physically, emotionally, and financially. Through it all, we have stayed strong and trust and believe in God.
Holley has been such a trooper and is such a strong little girl and that always smiles.
Freia’s never been sick. I remember maybe 1 time in 8 years she’s taken antibiotics. We always said she had super immunity. She was looking tired during the spring up to the summer- we have a very intense schedule with end of school, dance performances, competitions, and generally a lot of non-stop activities. I noticed something was “off” when we I returned from my work trip from India. She took at 2-hour nap (this girl does not nap) but her dad said she stayed up late. We said that we can sleep on the plane and rest during vacation. We left for NYC-Copenhagen-Sweden the next early morning and during the flight to Copenhagen, her jaws locked up.
Prior to this- she had lots of injuries- leg pains (we thought it was growing pains), back and neck pains (we and the pediatrician thought she pulled her back at the dance competition)- never would anyone imagine cancer She’s been through surgery and multiple lumbar punctures. We struggle daily with keeping it together and trying to move forward with a brave face in front of Freia but the anxiety and fear are high in us. We are still trying to move forward as a two working parent family because we know treatments are expensive. Most families, one parent stops working and manages the diagnosis and I can 100% see why. As the main caretaker of the family, it truly is hard to manage work, sibling, activities, homeschooling, and leukemia all at the same time. The struggle is real but I try to stay positive.
We were once a family that traveled a lot and was never inside the home much. We are an outdoorsy family and full of love and laughter. We are homebound a lot due to neutropenia and fear of her picking up an illness that will send her to PICU.
It’s hard seeing your child suffer even though she has the BEST attitude. With managing all this, I forget to laugh anymore for I’m focused on getting her well. There’s a strain because we are exhausted but we try to make life as normal as we can. I guess a new definition of life for now.
