Milo is always so happy and full of life. He loves to play and is your typical little boy. He loves the TV series on Netflix ‘How to Train Your Dragon: Dragons Edge’ and he LOVES Moana (Maui is his favorite).
In November of 2017 Milo was diagnosed with Acute Lymphoblastic Leukemia. In the months prior to his diagnosis, he would run high fevers but every time we took him to his pediatrician we were told it was just viral. While we were out of town on a trip, Milo began throwing up in the back seat of the car. I took him to urgent care where they did blood work and found that his hemoglobin was a 2.4 (it should be 11+). We were eventually transported back to our local hospital in Charleston where they confirmed it was ALL.
Milo has had two bone marrow biopsies/apriates, close to 20 lumbar punctures, countless rounds of chemotherapy and he still has 2 1/2 years to go with treatment. I (Milo’s mom) ended up losing my job because the company I worked for didn’t offer unpaid days and I exceeded my PTO, plus I had not been there a full year yet. I now stay home with Milo to take him to all of his therapy appointments, clinic visits, any emergency visits to the hospital, etc.
Milo’s cancer diagnosis has changed so much in our lives, not only financially but spiritually. We have grown closer to God as a family and we have developed so many great relationships with other people who face our same struggles.
September 1st, 2016 my husband and I received the news no parent should ever hear, “your child has Cancer”. Acute Lymphoblastic Leukemia (ALL). I remember being put into a tiny room with her now Oncologist, going over the next steps, hearing all the drugs she would be taking and all the possible side effects. I remember hands on my face, elbows on my knees looking down, telling my self to wake up. I even pinched myself. It didn’t feel real. I kept thinking, she’s going to loose her hair. I mean really Maggie, her hair?! I guess it was easier to think about that as opposed to thinking that this could take her life. My husband and I took a few minutes before going back to her room. We broke down, held onto each other in disbelief then sucked it up. We vowed to be as strong as possible for our then 3 year old little girl who was about to face the toughest battle she will ever know.
She stayed in the Hospital for about a Month. It was difficult for my family because her treatments were in DC and we live about 20 minutes North of Baltimore. We had two boys at home and our families lived in Ohio and New Jersey. We had to switch on and off every two days just to make sure our boys had us both, I mean they were going through this just as much as we were.
After that month my sweet, now chubby and slightly irritable baby girl was home ( thanks steroids!).It was very scary being responsible for giving her all the medication but it became my new life and we had to get used to it fast.
When Mia came home, despite her extra chubby cheeks, she looked normal. She didn’t look like she had Cancer. People treated her the same as they would any other child and I made no effort to let them know of her condition. It wasn’t until February when her hair came out. My husband had the hardest time with it. I was trying not to show any emotions because I didn’t want Mia to freak out. Little did any of us know that she loved her new style. She loved being bald! Thank god! So that made it so much easier for us all to accept, but now everyone knows. They could look at her and know she has cancer. That’s when the treatment became different from the other kids. The looks of sympathy. I get it, I did it myself to others. But for some reason it just bothered me that they knew. It took me a week or two to embrace it, I mean Mia was ok, why should it bother me?
Mia is on track to being finished with treatment in November of this year. She has had a few set backs like the Flu and Pneumonia, but nothing too serious which earned her a trip to the Hospital. Her numbers have all been good, but we just recently had a scare because her numbers dropped drastically. Thankfully it was caught in time and everything is back to normal.
This is definitely a journey I never thought I would be on but we have all made the best of it. Mia was able to experience great things because of her diagnosis and be the face of Cancer for foundations. She was the Eastern Shore Maryland Girl of the Year in 2017 for the Leukemia Lymphoma Society and was also the face for an amazing local foundation called Living for Livi. Our family went to Disney World through Make-a-Wish and she was able to wear her Rapunzel wig made by the Magic Yarn Project. Now, it’s almost the end of our journey and we get to capture it thanks to the Gold Hope Project.
I will forever be grateful to my family, friends and community who gave us their support from day one, and to all the Foundations that made good memories for our family darning this difficult time. To you all I say, thank you!
Luke loves Lego and Dinosaurs. He is very smart beyond his age. He often asks very deep questions for a 5 year old. Prior to Luke’s illness he loved playing outside, running and was learning how to ride his bike. Luke loves books especially science and space books.
In the spring of 2017, Luke experienced night sweats and severe leg pain. He was misdiagnosed multiple times. First as growing pains, then toxic sinovitis, next arthritis and finally leukemia on March 10, 2017.
We have primarily been living in London at the Ronald McDonald House since Luke’s diagnosis. We are a 2 day drive away from home. Luke has been medicated 3x’s by Ornge Air Ambulance.
Luke has had bone morrow biopsies, lumbar punctures, multiple forms of chemotherapy, several tests and scans including xrays, MRI’s, CT’s and drain o grams. Luke has experienced complications and had to have his port removed due to a condition called pseudomonas which developed into typhlitis resulting in a large abscess in his abdomen. He has developed a blood clot in his neck where a temporary central line was placed. Luke now has a picc line. Luke also spent time in the pediatric critical care unit and was intubated.
Our family is not always able to be together. Luke has a 2.5 year old sister, Avery, who has spent many nights sleeping in the hospital despite not be sick. She has had to spend long times away from her mother who is Luke’s primary care giver.
Luke has missed both Halloween and Christmas as a result of being very sick at times. He has not attended school since early March 2017.
Luke is often very lonely and longs to be a kid. He gets so excited to meet new kids at the RMH or Hospital.
Megan loves playing with bubbles, going to Disney and meeting the characters. She likes to twirl in dresses, play at the playground, go in her sandbox and build sand castles. She will stand next to objects and say take my picture. She has always loved her picture being taken.
In the fall of 2017, Megan was having on and off fevers with leg pain. She was super tired all the time and would sleep or lay around more often. Some days she was fine and other days she wouldn’t feel good at all. She was diagnosed with ALL on September 18, 2017.
Megan receives chemo through her port, in pill form, sometimes as a shot in her leg, and in her spine. Between each cycle we have 3 week delays while her counts recover so her body can handle getting more chemo. While getting chemo she isn’t very hungry and can be tired. When we are on chemo breaks, she eats everything in sight and enjoys extra play time. She misses being able to go to the playground and playing with kids due to low ANC and risk of getting sick.
Since Megan diagnosis I haven’t been able to work. She goes to the hospital for treatments once or twice a week. We haven’t been able to do normal things like we used to. Since September we have been to Disney twice. Before we would go a few times a month. We aren’t able to take her out to eat often or to the grocery store at times. She wants to go shopping but, we can’t take her due to risk of her getting sick. When her ANC is high we try to take her out and do as much as possible before it drops again.
I am hoping this will be the last time she looses all her hair and have finally decided we should capture some professional pictures of this stage. At first I didn’t want to remember the bald stage and when she regained her hair and it fell out for the second time I realized we should do pictures.
Vera is an independent, smart, hilarious, beautiful, brave, and courageous little girl. She loves the color teal, anything sparkly, rainbows, unicorns, fashion, and anything ‘girly”. What makes Vera laugh the most is her older sister, Tessa. They crack each other up!
In the fall of last year, Vera had occasional left upper arm pain with no abnormality in x-rays. After seeing a pediatric orthopedist, having an MRI, and then having abnormal findings, she had a bone biopsy. That came back as a blue cell tumor and she never had any abnormal blood-work results. Referred to a pediatric oncologist, she did a bone marrow biopsy from her hips, and that’s how they found the leukemia (lymphoblats) cell. Chemo started 3 days after diagnosis and port-a-cath placement.
Since diagnosis, she receives intravenous chemotherapy every week or two, oral chemotherapy intermittently, and spinal chemotherapy every 1-4 weeks. We struggle financially with the cost of insurance deductibles and medications. I also had to quit my job to be with Vera 24/7 because she can not return to school yet at this point in her treatment. So we are a 1 income family.
Every single part of our lives has been flipped upside down and we’ve endured pain that no human being should ever have to feel.
Mariah is the sweetest little girl you will ever meet. She’s a lil diva. She loves to dress up. She loves animals. She like reading playing outside playing barbies and painting.
Mariah got sick over the weekend in February of this year, we thought she had the flu or an infection. But we were wrong. We never thought in a million years our princess would have cancer. Mariah was diagnosed February 20, 2018 with Acute Lymphoblastic Leukemia.
Mariah has had 6 LPs in the last 2 months and she is on chemo. She’s lost all her hair. It’s been so hard for her and her family. Our biggest struggle is coping with this illness and adapting to change. We all have cancer not just her, we are in this together and will get through it all.
Mariah is the strongest princess I know and we will get through this.
