Mom Confession: I don’t like looking at baby pictures of my daughter. Let me explain. See, when you look back at your cute, chubby cheeked kiddos, you remember the slobbery kisses and all the sweet firsts (first laugh, first...
Mom Confession: I don’t like looking at baby pictures of my daughter.
Let me explain.
See, when you look back at your cute, chubby cheeked kiddos, you remember the slobbery kisses and all the sweet firsts (first laugh, first food, first steps). When I look at baby pictures of my daughter, my eyes zero in on the protruding, tumor filled forehead that I did not see coming. I notice that she’s often propped up when she’s sitting or using her arm to counterbalance the lack of strength on her right side. I see with hindsight what I cannot unsee, my child was not well and I did not know.
Five years ago at this time, we had a 14 month old who cried a lot and seemed to need a lot of extra cuddles to calm herself. She wasn’t reaching her physical milestones of pulling up, standing or walking and she was beginning to regress. Sitting and crawling became difficult and seemed to really upset her. What was causing her to seem to be in so much pain?
On the last day of September, 5 years ago, our daughter was diagnosed with a very large and invasive brain tumor. Immediately, all of the struggles, delays, and tears started to make sense and the parent guilt hit hard as we realized our child had been hurting as we were waiting on her to catch up with her peers. The next few weeks were a blurry whirlwind that included relocating half of our family 6 hours from home, 2 brain surgeries, a blood clot in her brain, placement of a PICC line, a fistful of daily meds including twice daily injections, and all of it leaving our family mentally and physically broken. And that was just the beginning.
It seemed like the punches kept coming as Tillery stopped eating by mouth, began chemotherapy, and had a fall that caused a near fatal brain bleed. We lived away from home for 7 months and returned as different people who had to rebuild ourselves as individuals and as a family.
Once we returned home, we were only through the first phase of the treatment plan and we continued on with chemotherapy as other complications arose. We had a chemo that stopped working and she developed a fungal infection in her brain that sent us back to Cincinnati by medical flight.
It was 2 years before we were able to start to create a “new normal” routine for our family. Even then, we began to face the side effects that followed treatment and really started to see the differences in our child vs. her peers.
September is Childhood Cancer Awareness Month.
Every year in September, we relive it all. We remember all that our daughter went through and all our family suffered as a result of the childhood cancer diagnosis. We wonder what the future will be. In September, we are reminded that even when we feel “normal”, we never fully are.
We will never apologize for the onslaught of statistics, sad stories, and pleas for donations that blow up our social media accounts. We will not slow down or ease in our efforts to make the future better for our child and others. Our fight never ends because her fight never ends.
Will you join our fight?
Ways you can get involved:
1. SHARE – We will be sharing our story and stories of others. We will be sharing statistics and information about childhood cancer. Simply passing that information along to your friends and family helps our efforts to reach more people and grow a community of compassionate individuals who are aware of the impact of childhood cancer.
2. DONATE – We have multiple fundraisers going on through the end of September and you can participate or donate to any of them. You can also simply make a donation on our Alex’s Lemonade Stand fundraising page - https://alsf.me/1683934
3. DEDICATE YOUR MILES – Alex’s Lemonade Stand started the Million Miles Challenge a few years ago with a goal to collectively travel a million miles to raise awareness for childhood cancer. You register by following the link below and then set your mileage and fundraising goals for September. Throughout the month, push yourself to go the extra mile, literally, for kids with cancer. As you run, walk, or cycle, take some time to think about the kids who are fighting cancer. Then share with your friends and family about dedicating your miles to those kids and invite them to donate towards your fundraising goal. https://alsf.me/1683934
4. HOLD A LEMONADE STAND – We love lemonade stands because it’s so simple, even the kids can participate. Our kids love serving up icy cold lemonade and helping to share about childhood cancer.
5. CREATE YOUR OWN – The above ideas are easy for everyone but you may have your own. Feel free to use your talents to participate in Childhood Cancer Awareness month with your own unique touch. We would love to hear about it.
The ultimate goal is to end childhood cancer. We won’t stop until we reach that goal.