Annie Mae is Milo’s big sister. Annie Mae has sacrificed a lot since Milo’s diagnoses.
November 14, 2017 was the day we heard the words, “your child has cancer.” Nothing can prepare you for those words. We started this journey knowing almost nothing about childhood cancer to now understanding more than we would like. In the past 10 months, our son Milo has endured 177 doses of chemo, been put under anesthesia, sedated 19 times for tests and lumbar punctures and spent 52 nights admitted to the pediatric oncology unit at MUSC.
Milo was diagnosed with B-Cell Acute Lymphoblastic Leukemia, and since then our lives have taken a dramatic turn to what we now call our “new normal”. Prior to Milo’s diagnosis we had a two-person income but due to the amount of time in and out of the hospital I, his mother, was terminated from my job from missing too many days.
Milo has been through more in these past 10 months than many will their entire life time. He has been quite the warrior through everything even during our long hospital stays. We have watched as he has been hooked up to so many tubes and lines, knocked out on morphine for weeks because of pain and sores that filled his mouth, throat, stomach and intestines from the chemo. We have watched him wither away to nothing after not eating for two weeks and have watched him lose his hair only to grow it out and lose it again. We have watched him struggle to walk and stand up, but we have also been able to celebrate his accomplishments and celebrate his drive to not give up this fight. It’s been challenging to say the least and our situation is something I wish no one has to go through.
We have learned that childhood cancer doesn’t only affect the child diagnosed with the disease but the entire family including siblings. Our daughter is 5 and is the most compassionate and loving little girl. She cares for her brother and does whatever she can to make him feel better and put a smile on his face. She has had to sacrifice a lot since his diagnosis because of finances but also exposure to viruses and other sicknesses that could seriously affect Milo. She is unable to do things a normal 5-year-old would because of her brother’s sickness and although she has days where it does really get her down, the majority of the time she is understanding and supportive and finds compromises.
This journey is one that is so full of ups and downs, worries, fears and anxiety – the reality is this disease guarantees nothing. Even cancer like Milo’s with a high success rate with treatment still shows no mercy on some and those that do fight and push through aren’t guaranteed a life free of worry. We will have to monitor him the rest of his life from side effects of the harsh treatments he’s endured. As a parent this is truly a nightmare and there have been days where you question everything, even your sanity. It’s exceptionally stressful trying to maintain as “normal” of a life as possible while you juggle appointment after appointment, unplanned emergency room visits and hospital stays and your everyday tasks and finances. To say that we are blessed that there are people like you who do something like this is an understatement.