“Your Child Has Leukemia” : One Mother’s Courageous Journey
Written by Kim Ujifusa for the AllergyKids Foundation
My journey into better health practices and food consumption began in a way I would not have chosen. But, perhaps necessity and tough circumstance does breed a desire to change things, and for that I am thankful.
For weeks my daughter Grace had been tired. I had noticed bruising on her legs, but nothing atypical of a rambunctious newly five year old. But, my intuition told me to check on the bruising nonetheless. I sent an email to her doctor and was told to bring her in at my convenience for a check up. Not more than a few days after that email was sent, Grace ran a fever of 104, was vomiting, and could barely move from fatigue. Naturally, I took her right to the doctor. The doctor presumed it was a viral bug, after her Strep test came back negative and we had clearance to go home. We were told to return if it got any worse. But, I was unsettled. Something was not right. I asked her to please check Grace’s leg bruising (which was not much more than small blue bruises) and that is when the doctor went pale. She ordered immediate blood work on Grace.
Once, when I visited the phlebotomist for routine blood work I can remember commenting about how well behaved and calm the child in front of me was. He was having his blood work done and acted as though it was nothing at all. The phlebotomist whispered to me, “Those are the ones we worry about. Those are usually the ones who have something serious going on.” As my precious little child lay in my arms that day having her blood drawn, she was listless and limp. Those words persisted in my head and I knew Grace was facing something bigger than we had experienced before.
As we received word on her test, the doctor informed me that Grace most likely had Leukemia and we were told to head straight to Doernbecher Children’s Hospital because there wasn’t a moment to lose. My ears became hot, my head felt too heavy to hold up. I remembered tasting saltiness in my mouth and I realized tears were streaming down my face, but I don’t remember fully registering what was happening. I do, however remember the look on Grace’s face…the fear in her eyes. I remember every detail from that moment, though after that time events sort of spiraled into a darker abyss of foggy memories. I particularly remember feeling the need to protect Grace from fear, so I calmly told her everything would be fine, we just needed to get her body stronger. In my mind, I realized the enemy her body faced was much more than a trifling cold.
After a Bone Marrow Aspirate and more blood work, Grace was officially diagnosed with Acute Lymphocytic Leukemia or A.L.L. She immediately received a spinal tap with Intrathecal Methotrexate and started heavy doses of chemotherapy. For two and a half years Grace received injections, spinal taps, oral doses of chemotherapy, and what I would sum up as plain old poison to kill her Leukemia.
During treatment she also acquired a secondary condition called ImmunoThrombocytopenia Pappules or ITP for short. It is a platelet condition in which she makes platelets but her body destroys them, leaving her covered in bruises, blood streaks, bloody noses, and potentially the ability to bleed to death. It was frightening to say the least!
So, where do our minds go during chaos, turmoil and hardship, but to the darkest corners of self-doubt and confusion? I was monumentally confused how a healthy little body could become so ill and quite frankly how many sick little children lived in hospital beds. It was dumbfounding to think there were not really any solid answers about how kids get Leukemia. There were merely schools of thought about what MIGHT cause Cancer. Grace was blessed to enter remission from her Cancer, but the curability rate, even now with our amazing technology was only 85% for Leukemia, which means many children are dying of it even as I write. And, my mind and heart could not be settled. Had I done something while I was pregnant to cause her illness? I don’t think so…I’m a stickler for caution while pregnant. Had Grace encountered something toxic in her youth? No! So, how had Gracie become so ill? That is when I decided to stop beating myself up over the things I might have caused and do something I could hold on to for dear life…learn. I read everything there was to read about Childhood Cancers. And, on my reading extravaganza, I learned a lot about Cancer in general, and guess what kept popping up in the literature? I kept reading research about the possibility of our food making us sick. I was dumbfounded! How is it possible that our food sources could be contaminated and making us sick? At first I was horrified, then angry, and then just felt helplessly under the control of those who regulate our food systems. But, just like I had to stop beating myself up about Grace getting Cancer, I decided I was totally confined by my emotions about toxic food and instead found myself more empowered by actively changing things for my family.
The Unhealthy Truth, written by the founder of AllergyKids, made a huge, positive change in my life by helping me see that you don’t have to totally flip your universe upside down, but gradually integrate positive changes in your lifestyle until it becomes a joyful habit. I now do such simple things, like buying the right milk, buying frozen fruit in bulk and making delicious smoothies (with fillers like Flax seed and spinach and things my children never even notice but their bodies thank them), and carefully reading labels before making purchases. We haven’t felt deprived of anything, but we just incorporate these changes fluently and we are healthier for it. I have noticed that I have fewer headaches and fatigue and I see my kids energized and less grumpy as well. In fact, on the days where they consume foods with lots of dyes I see a HUGE difference. And, as an added bonus-Grace’s platelet condition finally started trending upwards as we made more positive food choices. It seemed the more she consumed berries, flax, vegetables and, I would venture to say, healthier milk her body wasn’t so taxed by toxins and it could finally start healing. Interestingly, many people including her Oncologist-give the food theory absolutely no power. But, I saw the positive changes with my own eyes. I KNOW that it made a difference with her recovery and platelet condition after two and a half long years of Cancer treatments. I am endlessly thankful that I found this information when I did and I will shout its praises to anyone who will listen!
I will never own a box of Macaroni and Cheese again unless it’s organic!