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.
Hope session by Gigi’s Joy Photography | Facebook