I really do not know why this post has taken so long, this last part of this voyage has been difficult to say the least and I have been having a very difficult time processing it all. I have tried to be positive but it just seemed since December it was bad news after bad news. This last MRI I prepared myself for the worst. We had even talked about taking Aiden off the Chemo if it once again showed it was not working. Seeing the strain the chemo puts on his body has been so heartbreaking, every round just getting harder and harder to see him go through. I have been so focused on creating the best experiences for the boys and memories, living life to the fullest with the time we have. I look at it now and I see it has been a crutch for me to cope. If I just stay as busy as possible there is no time to process and grieve the relapse. Cancer really creates an unreal world that my writing ability is just not at the level to properly portray.
Aiden went for his scan May 4th and we were fortunate enough to have a friend offer us their place in Florida for the following week. Why stress in the cold of Canadian spring when I could stress on a beach with warm sunshine? Off we flew, Declan, Aiden and myself (I’m pretty crazy but not crazy enough to take all three by myself, sorry Lynky) It was so nice and relaxing, having sun on our skins after so long in hospitals and the long winter. I did not want to leave, I liked this unreal life where it seemed our problems were so far away. As our glorious week in Florida was coming to an end I even emailed our case worker the day before our flight home to ask for preliminary result. Why not live in this dream of beaches, sunshine and palm trees if this is the time we have left? Our case worker messaged back saying we could stay till Monday but Dr. J would like to do another round of Chemo. What this meant I really did not know. Was this good or bad news? The despair of hearing your child is terminal with an unknown timeline is unexplainable. My mind and heart has played tricks on me so many time as I have tried to navigate through this. Sitting on the flight home I even prayed that the plane would just go down. One clean sweep and this pain would be over.
I really had prepared for the worst. As I drove to CHEO Friday morning, a beautiful sunny day, I could not push the tears back down as I thought of everything Aiden has gone through. Trying to imagine how I was going to do this next part. Josh was taking Aiden to the hospital and we would meet up there to get the results at Aidens appointment. I told myself that this was my moment to allow myself to cry, alone in my car. All these thoughts and more raced through my head as I drove down the busy highway, tears staining my cheeks. Through this all I have said I hate when people call me “strong” maybe because I really don’t believe it but at this moment I see it. I see the strength it takes to push down the tears and show no fear as I enter the parking lot at CHEO and to smile and laugh with Aiden like this is all just normal.
I enter the MDU unit and we do Aidens blood work, I see familiar faces and it is an evil homecoming and security at the same time. Finally, we are called back to the room. Concerned, I ask the nurse practitioner if Aiden should be here. Was the team of people going to come in like last time. You know it is bad news when they fill the room. I was assured not this time and DR J, our oncologist, would be in shortly. The nurse examines Aiden and we review concerns and questions. I had asked for hydration for Aiden so they get that hooked up. Aiden is pretty much passed out on the plastic hospital exam bed by this point as Dr. J finally comes in. Right to the point, Dr J tells us… “THE SCANS LOOKED GOOD!” What!?!?! Did I hear her correctly? She pulls up the images on the computer screen in the corner, saying there is no new growth and some areas are even slightly smaller with only one area that is questionable. Josh goes over the scans on the screen with the doctor, which I really have a hard time even distinguishing what is brain or shadow or “bad guys”. I really don’t even care what it looks like on the screen as long as the doctor says it looks good that’s good for me. I don’t even know how to respond really. I ask why, what is the difference now. Dr J, I think a little surprised herself, suggests the new chemo drug he started the last month. The one they never offered before because “too expensive” until I begged that there had to be something else. I try not to dwell on the what-ifs but it is very hard sometimes. The only other difference is higher dose of cannabis oil but I don’t think Dr would ever agree to that and not sure I really do at this point either. Either way I am in shock.
Dr J then mentions that The radiologists from Boston sent her an email this week asking for a blood sample from Aiden to do testing. I guess because he had such severe radiation burns and his hair fell out on etoposide which is unheard of the Boston doctor would like to fly to CHEO to collect blood and bring it back to Boston. I immediately say yes not a problem, joking that if he wants to bring us to Boston that would be ok too! Any test that is non invasive and could possible help Aiden or others we have opted for so far. I still really believe there is a greater meaning or reason or purpose to all this whether to build awareness, educate, to help another child or parent or to aid in research. I need to believe in this or anger and bitterness and cancer will win.
The doctor leaves, I ask Josh if he would like a coffee. Aiden fast asleep at this point still hooked to hydration for the next hour. I head out of the room and see a door opened a crack in the exam room next to us; a beautiful Almonte mom playing with her daughter! I rush over to share the good news and tears roll down my checks as we hug! The Cancer ward really is a community onto its own. Being able to share these feelings with someone who totally gets it, the cheer and the pain that is unlike any other, has been a huge part of this voyage. With huge smiles and hugs we part ways and I head out the MDU unit shaking at this point. I pull my phone from my purse and call my Dad. He has been with me for the last 2 MRI results, “The scans were good Dad!” I cry into the phone. I believe the response was along the lines of “no fucking way your kidding” and I can hear his voice crack too. “Fuck yeah! Finally a god damn break!” excuse the language but it’s brutally honest. I am still shaking and tears pour from my eyes as I hang up the phone. I really do not know what I am doing at this point. I go get coffees at the cafeteria in my own little bubble of happiness, disbelieve, shock and relief and head back to Aiden, still fast asleep in the exam room. I give him a kiss and head out, it is Josh’s weekend with the boys so he stays with Aiden and waits for the hydration to go through and prescription renewal to start another round of chemo but at least this time there seems to be hope.
I look back now a week and a bit later and actually laugh at how out of it the news made me. I did not even ask about another MRI or another appointment or what this really means if anything. This last week I have cycled through thinking about it and not thinking about it. To open myself to hope again or not? I still don’t know if I truly believe the good news or not it is hard to feel and accept this happiness when I know it can be so easily taken. Everyday truly is a gift and not to be taken for granted. Maybe it was the Florida sunshine,maybe a greater power, or maybe just seeing through different lenses now but Aiden seems to be doing much better too. We went to our trailer and he walked all around and even ate real food. He has been in school for the last week and his EA said he had a fantastic day. and he did not even nap! I have explained to him that his scans were good and the medicine is working. I’m sure the next week when the chemo really takes effect and hits his body will be a different story but as they say one day at a time and this really is the break we needed. Aidens next appointment is on the 8th where I can go over my list of questions but until then I guess we just live and continue on and love my “fiery little conqueror” with all my heart!