On June 18th, 2018, our son Matthew (Matty) was diagnosed with Acute Lymphoblastic Leukemia, the most common type of cancer and leukemia in children. On a personal note, nothing about the word cancer in the same phrase as the word “child” seems common. About 3,000 people younger than age 20 are diagnosed with ALL each year in the United States. At exactly 2.5 years old, to the day, our very happy and very healthy son came down with a high fever and severe leg pain that did not seem to be going away. 48 hours into what we were hoping was just a virus, we went to get his blood checked and received the dreadful news. “Matty’s blood work came back irregular. It looks like there are cancer cells present. Pack an overnight bag and head to the emergency room as soon as you can. Plan for a long stay.” We did just that.
Once it was confirmed that there were, in fact, cancer cells present by a hematologist at our hospital, we began the process of being admitted for our three-week-long stay. One of many to come. Although this new “normal” is as far from normal as could be, Matty has done an amazing job adjusting to our new life. Even though he has to take many medications in the morning and evening — he’s made a game out of it and makes us chase him around the house in order to give it to him. It’s actually a process he enjoys. We go to clinic for weekly chemotherapy, but he enjoys that too — he loves playing with the toys there and enjoys the drive. We got lucky, in a way — he won’t remember the majority of these 3 years of treatment. Being diagnosed at only 2.5 years old has it’s benefits. We’re so thankful that we have an AMAZING support system around us, health insurance, a team of great doctors and organizations like The Gold Hope project that make these tough times a little easier and brighter.
Matty’s everyday is so different from a typical 3 year olds, but this isn’t a sad story. He’s so bravely fighting the fight of his life, and he’s doing it with such grace. He’s our light and strength. We couldn’t be prouder of the way he’s handled the last 6 months of treatment and look forward to taking him around the world when he’s done with it.
Miles is a smart, funny, sweet, cuddly, spitfire. He is smart as a whip, and loves math, Legos, his big brother, his stuffed frogs, and his family with all his heart. His favorite thing is Legos, and playing with his brother. He enjoys helping me cook in the kitchen, and says he is going to grow up to be a chef, or a master Lego builder. I think he has the mind of an engineer, he is constantly asking how things work. He also likes riding his bike, swimming, and playing on any playground. He loves sitting around a campfire (whether we are camping, or in our backyard), and making s’mores.
Miles was diagnosed with Leukemia at age 4, on May 2, 201. Miles was getting fevers on and off for about 2 weeks. He was also vomiting during some of the fevers. These symptoms led us to take him to the doctor, where his wonderful pediatrician couldn’t find anything causing the symptoms, so she sent him for blood work that day. The results were in the next day (we were back at the doctor), and we got the direction to go directly to Children’s Hospital of Wisconsin, to their emergency room, where they would be waiting for us. It was the scariest, worst day of our lives, but the doctors and nurses at Children’s were and have been amazing since that day. They ran more detailed tests, and were given the horrible news that Miles had Leukemia.
Miles displayed other symptoms of Leukemia, that at the time were not too alarming, but in hindsight, were clues to his diagnosis. He had some bruising, that didn’t fade. He was pale, he was fatigued. He had leg (bone) pain. He also developed petechiae under his eyes and on his chest.
Miles has had so many needle pokes and blood draws, I can’t possibly count. He had a PICC line in his arm for the first month of treatment, and then had surgery to place a port in his chest for his IV chemo. That port line broke, so he had to have another surgery to replace the port. He has had several blood transfusions, LOTS of time spent in the hospital in-patient. Several (6) 3-4 day in-patient stays, for a 24-hour chemotherapy drip (methotrexate), followed by waiting (in-patient) for the drug to clear his system before he could come home. He has had many (I’ve lost count, maybe 14 or more?) sedations followed by a lumbar puncture to deliver chemotherapy to his spinal fluid. He has had several fevers, resulting in an automatic trip to the hospital, often followed by a few days in-patient. He takes oral chemo pills every day, as well.
Our family has settled into a routine, with Miles’ medical needs, especially now that he is in the maintenance phase of treatment. But when Miles was first diagnosed, and admitted to the hospital, our lives were turned upside down. The first days, weeks, months of treatment were brutal. It felt like we lived in the hospital. Our older son, Jude (who was 6 at the time of Miles’ diagnosis), was shuffled around, and I still feel badly for what he has been through. Jude also has Autism, so the change of routine was hard on him. It is always difficult when families can’t be together, so those days and nights were difficult. Besides the obvious struggles of being in and out of the hospital so much, struggling to be present for both kids, there are other struggles, such as financial, which I know many families can relate to.
Our life will never be the same. There is “before cancer” and “after cancer”. We feel very lucky that Miles is responding well to treatment, and for every day we spend with him. But we have a kid with cancer, there are worries and concerns I never thought about before his diagnosis, that are always in the forefront of my mind now. For example, travel is always tricky. We don’t get to travel much, but when we do, even if a few hours away, I need a list of nearby hospitals to take him to in case he gets a fever or ill. We aren’t really international travelers either, but won’t be taking him out of the country anytime soon, in case he has a medical emergency.
I’m also always concerned about illness. Other people getting my kid sick is a big worry, germs, etc. I was never a big worry-wort about germs before, but a simple fever can put my child in the hospital for days, so now I always have hand sanitizer. I also worry about other illness, and if people/kids have had their vaccinations, since Miles cannot have vaccines while in treatment, and his lowered immune system puts him at greater risk.
I could write a novel about how brave my boy is, and what he has been through his journey. He faces cancer like a fighter, and I’m often in awe of the stuff (needles, blood, sedations, fasting, surgery, hospital visits, daily pills, etc…..) he has to go through, without missing a beat. Yes, he gets scared, cries, etc. Of course any child would. But I’m so so proud of him. He is my hero.
I wish he didn’t have to go through any of this, I wish no family did.
Jaxon is a very sweet, brave, funny, and smart little boy. He actually laughs a lot at all sorts of things, like stuff his little sister says or does, things our dog does, jokes in movies, etc. Jaxon LOVES legos. He builds quickly and has a huge imagination. From being in the hospital so much he developed a love for video games and movies. He likes science and art. He loves super heroes as well.
My son, Jaxon, was diagnosed with Tcell ALL on March 26,2014. He became an official survivor in July 2017. He was diagnosed with a secondary cancer, Mucoepidermoid Carcinoma, on March 26, 2018 (exactly 4 years from his initial diagnosis).
Before his diagnosis he had strep throat and swollen lymph nodes that weren’t responding to antibiotics. He was misdiagnosed a couple times. A lump on his jaw led up to the carcinoma. It was biopsied 2 times before St. Jude’s gave the final opinion of the rare cancer in Jaxon’s parotid gland. We now travel 3 hours away from home to see a specialist. His face is temporarily paralyzed from the tumor removal. Jaxon is currently in remission.
Cancer has had a negative impacts on his social life, change in dynamics with family members, finances, etc. The positives would be that we are more grateful now for everything in life. We have met life long friends and have tight bonds with people we have met at clinic. Our faith is stronger.
Jaxon is inspirational to almost everyone he meets. He never complains or asks why, even though he has faced more than most adults will in their entire life.
Austin is a lover of all things superheroes and legos. He loves to laugh and loves goofy, silly, and of course gross things!
Austin was diagnosed with Acute Lymphoblastic Leukemia in February of 2016. He had swollen lymph nodes leading up to his diagnosis. Austin had undergone many months of chemo treatment and the hospital is 1.5 hr drive away from our home. Finances are a struggle as is the time spent away from work and school.Yes.
Cancer treatment changes so many things about family life. Austin has an older brother, Taylor, who has also been impacted seeing his little brother go through treatment.
Austin is in 2nd grade now and we are all looking forward to the end of treatment in about a year.
Easton is very gentle and caring. He is always checking on everyone else to make sure they are okay and is always the first to know when someone needs a hug or cheering up. He can also be very shy at first, but once he warms up or sees that his brother has then he is ready to go! He is all boy. He loves being outside at all possible times and loves dressing up like superheroes and running around the house. It is very hard to get him to do anything without his brother by his side.
Easton was diagnosed with ALL when he was just 2 1/2 years old. I noticed bruising on Easton’s legs. I took him to the doctor where everything tested came back normal. A week later I noticed the bruising had moved to his feet and I took him back in to be checked. This is when his blood work showed abnormal results and the doctor instantly knew what it was.
In the beginning of treatment, Easton was unable to do many things that kids his age were able to do. His immune system was so low that we tried our best to keep him inside and keep him entertained around the house. Easton’s twin brother was a very big help.
Easton has received multiple chemo treatments and lumbar punctures. A week after diagnoses Easton also contracted flesh eating bacteria in his leg. He was hospitalized for almost three months for this and received multiple surgeries on his leg. He also had to spend time in ICU due to this infection and ultimately had to learn to walk again. Easton is now walking and running and able to go to school. He does still have difficulty understanding why he can be so “normal” but still have to receive chemo at the doctor every month and also sometimes struggles with the fact that his leg still give him trouble and he cannot keep up with his brother.
Our family has had to adjust to many different things. We have tried to adjust our best to helping Easton live a “normal” life while also watching out for him and be cautious about anything and everything that happens to him. We have also had to adjust for his twin brother Eli. Eli received little attention at the beginning of Easton’s diagnosis with us being in and out of the hospital and in and out of the clinic so much. We not spend as much time with both boys equally as possible. Eli’s life has also drastically changed. Because they are twins, Eli receives blood work testing every three months and a bone marrow biopsy every year to be tested for early signs of cancer.
