Everyday I have people ask how Aiden is doing. It has been a very long time since I have write anything. Trying to settle back into normal life over the last month has had its ups and downs.
As we come to the one year mark when our world changed forever, I feel the effects of PTSD settle in. I will close my eyes and have flash back from Boston, or images of Aiden the night before surgery, or yelling down the hall at sick kids in panic at the clown to go get help. These moments somehow just got pushed aside as a great importance of being strong for Aiden overtook these moment. In the quite of my home I recollect the year past.
The last couple weeks since Aiden being home have been a whirl wind of chaos. Stepping into the busiest time of year at work has been both a blessing and a curse. My mind has not had time to wander but also no time to establish a structure and routine now that all boys are home. I feel like I could hibernate a week and that still would not be enough. But I am coming to terms with the fact this is my life now. I have three boys, one with special needs, I have my own house and a full time job. I am going to be busy! The saying goes “there is no rest for the wicked” but I think they meant to replace wicked with words cancer mom.
Today we woke at 6:30am I got all the boys ready with drop off at daycare and school and then hit hwy 7 with Aiden heading to our appointment at Sick Kids in Toronto. Today they sedated Aiden and put him under for a couple things. They replaced his gtube button which usually gets replaced every 6 months but thankfully his has held out for almost a year. I had to go to the specialty food shop at the hospital, purchase the button but not take it. The plan was for the gtube nurse to bring a couple sizes down while he was under to see which size would fit now. Thank you to the team at Sick Kids and my Cheo interlink nurse for helping arrange this. He had gone down a size from all the weight loss so I am hoping this button will be more comfortable for him with less leaking and granulation.
I have kinda kept this appointment quite, as I flashback to our MRI in Boston during radiation. Is it working? In this case did it work? In addition to the gtube replaced Aiden also had his final post treatment MRI. We had tried this a month ago but because he had his cvl line removed for swimming at Bloorview he went ballistic when they tried to inject the contrast needle and the MRI never got done. So we were back at it. This time sedated so they should have very clear pictures but also they were able to do a lumbar puncture to test if there are any live cancer cells in his spinal fluid still. When I got the call they would be doing this I was speechless for moment. I did not even know what a “LP” was. They had never done this before which nurse made sound odd that he never had done at diagnosis. I asked what it was and what it would mean. I also asked, maybe to my regret, what happened if they find something. To which the reply was “the team would sit down and discuss further treatment at that point” I can not even being to imagine more treatments. These words have rang through my head so many time at this point I don’t even know exactly how they went anymore or what is the creation of the mind but it was along those lines either way.
So as I lay here at 12:30am and I was once asleep and now awake I think back on the day. I think back on watching Aiden struggle to not breath as the mask was put on his face, I think back to the foster mother I met in the hall who shows me the good in the world and asks me how I am still smiling; I think back to seeing Aiden fast asleep then screaming and crying as they remove the IV line and he begins to wake. I think back to the drive in traffic as Aiden repeats the same questions over and over with poor short term memory as I try to hold it together and concentrate on the road. How can so many pieces fit into one day?! Tomorrow we will do the city commute from Barrie to downtown and tomorrow we will go to clinic and that is all I know right now.
https://youtu.be/Ipf2tqVMhVs