Why do we do this? We have been asked that countless times. This. As in our charity. As in our fundraising. As in multiple posts about pediatric brain cancer and research. In my head I wonder why I am even asked.
Think about your child, nephew or niece, grandchild, cousin, sibling, or any child for that matter that you know well. Remember them at their happiest, most playful time. Running, playing, jumping, giggling, and just enjoying a carefree childhood. Like it should be. Then one day, this child becomes forgetful. Asking “mom, aren’t we going to have lunch” when you know lunch was eaten 30 minutes ago. You brush it off and laugh, calling him forgetful and teasing him. Then you notice he becomes a little clumsy, falling when he tries to stand on one foot. Since he laughs it off like he did it on purpose, you laugh it off too. Not thinking more about it till much much later. This is when you find out this child has a brain tumour and there is nothing you can do to help. Nothing you could have done to prevent this. Nothing you can do to treat or remove this. Just nothing!
When you think that diagnosis was the worst thing you have heard, one week later this child tell you she can’t feel her leg and arm. She is now completely paralyzed to one side of her body. You now need to carry her everywhere, wanting to ensure she is not left out of anything. You carry her to the bathroom, into the tub, to the playground, to bed…. you will carry her for eternity if you had to, but you don’t get that long. You can see on her face she hates that her independence is gone, now relying on everyone around her. You see the sadness in her eyes, see the anger erupt during little tasks that once were simple.
Soon after, his speech becomes garbled. A once talkative child is having difficulty saying ‘I love you’, a simple sentence you yearn to hear till the end of time. Frustration now looms in him and you as he becomes more and more difficult to understand. Swallowing is now becoming an issue and he begins to drool. Even his saliva causes him to choke. You try to make soft easy-to-swallow foods, and you catch yourself holding your breath every time he swallows a spoonful. You wonder every night as he is asleep if that will be the last time you hear him speak, the last time he eats food on his own, the last time you hear ‘I love you’.
Since the tumour is in her brain, it is inevitable that her breathing is next to deteriorate. As you sit and watch her deeply and forcefully inhale, you notice yourself taking each breath with her. Somehow hoping your deep breath will help her. Her breathing is laboured, and noisy because no saliva is being swallowed now. The tumour has grown so much that she is unable to move her head side to side, needing you to help her reposition in bed or simply to look out the window. She is sleeping more during the day, barely waking longer than a few hours at a time. You sit at her bedside wondering how long she will suffer, when she will eventually be taken away from you. You don’t know how much time you have left with her and you are screaming, begging and pleading for this not to happen.
We do this so other families don’t have to know this life. Don’t have to know this struggle. So children don’t have to know they are slowly dying and there is nothing anyone can do to help them. If there were families like ours who fought to make a change 30 years ago, maybe Madox would still be alive. Maybe there would an effective treatment, or even a cure. Sadly, there wasn’t and Madox did not get a chance to fight. Personally, I would not be able to look myself in the mirror if I just sat back and did nothing, if 30 years from now there was still no progress. So we will continue to raise awareness and hopefully funds as long as we can for the children currently fighting and for all the children who will one day hear the DIPG diagnosis.
Why do we do this? We do this for your child, for your niece, for your grandchild, for your cousin, for your next door neighbour. For a future to those diagnosed with DIPG.
We can only hope our fight will help.