Growing up I felt like I had all the time in the world. I was carefree and invincible. I believed in infinite possibilities. My friends and I would make up dances on the beach, we would climb tress and make forts. We jumped out of barns onto piles of hay or snow boarded down the roofs into piles of snow. We had mud fights in cow plop fields. We dreamed big and played hard. Time passed a bit more and my friends and I would stay up all night playing poker and listening to Steve Miller band. I remember my first dance and going on my first date all awkward and nervous. Summers were filled with serving jobs and boating on the big Rideau. I went off to University for visual arts, against the better judgement of my parents, because as a teenager you think they know nothing. After a year I did not see a career in painting and drawing nude people but once again I had all this Time in the world. Now I look back onto my childhood and teenage years and I see how precious all these moments were and how lucky I was to be able to grow up so free and healthy.
Everyday I look at Aiden and see all that he is missing out on and it is not fair and it is not right. I feel so powerless to give him all these memories and a chance to grow up so free. He should be running around catching frogs, He should be having slumber parties with friends and someday fall in love and kiss his first girl. and I think of all these things, all this time that has already been taking away from us and is being taken away from us. I look over our voyage so far and we have been able to do so many amazing things, Our trip to Disney, meeting the Ottawa Senators, taking Aiden to his first concert, and as precious as these memories are they too are getting harder. I don’t want to cram a lifetime into a unknown timeframe and windows of good days. I would trade all of these amazing experiences for just more time but it something you can not buy or beg for.
I am trying to process this situation and look for the positives and meaning in all this but everyday it just gets harder and harder. The one thing that does help is seeing how many people truly care and love us. I see my community and friends come together in fundraising and reaching out to support us any way they can and I am so truly grateful. Like they say “no one fight alone” and I truly feel we have an army of support. I have had a lot of people ask how Aiden is doing and for an update from His last MRI but it is getting harder and harder to answer as the reality of this awful disease set in. We have fought this once but unfortunate the winning was short-lived and the cancer is still growing. From the last MRI the doctors are unable to tell us if the chemotherapy is even slowing down the growth. You think you have all this time in this world until you find out you don’t.
We are trying to just live each day as normal as possible but this is anything but normal. We keep pushing on, keep fighting. Aiden has been going to school and I usually pick him up in the afternoon although as the fatigue kicks in harder I don’t know how long he will stay in school for. We are working out a better schedule to give him a couple hours to get away from the house and me and be around other kids. Generally Aiden is happy and jokes around, plays with his brothers and nightly cuddles with mom. Besides the standard effects of the chemotherapy, tired, no appetite and hair loss there is no other symptoms of growth from the outside looking in. The weekly trips for blood draws are getting harder and harder as Aiden is tired of being poked and proded and rightfully so.
We have Aiden on canabis oil and I have started taking him to reiki, I have spent endless hours on google looking for other trials, I have called the doctor we had in Boston trying to reach out for any other suggestions, I have asked about more radiation, stem cell, more chemo But unfortunately Cancer is a horrible sneaking, cruel and unforgiving time stealing monster. We will be adding another chemotherapy as Aiden starts another round next week with the hope that this may slow or stop the growth and we have another MRI booked for May. I can’t believe one of the number one childhood cancers out there, medulloblastoma, and the doctors can not offer us much of anything. I am angry and heartbroken and a mix of so much more I can not explain. The debate of quality of life vs time is continually on our mind as we just take it one day at a time. Thank you everyone for all your support and love and keep up your prayers.
Aidens passing has been incredibly difficult but a lot less difficult because of the love and support we have receive from family, friend and community. Thank you to everyone who has sent meals, condolences, and donations so I can take this time I need now to grieve and take care of myself and beautiful blended family. I am so incredible grateful for the support we have received.
Stephanie (aka MamaOutpost)