The phone rings, it is the MRI department at Sick Kids in Toronto. “Hello, is this the parent of Aiden Fotherby-Verk”, Yes I reply, “This is appointment reminder for December 15th at 1pm, no food or drink after midnight, clear fluids or apple juice until 10 am that day. Thank You” I hang up the phone. Has it really been 3 months? We are just starting to get into a routine at home and gain some resemblance of normalcy. The what-if’s start to seep in but I push them back down where they belong. There is still 2 weeks until Aidens appointment I could go mad thinking of all the what-if’s for that long. Luckily life is so busy for the most part there really is not much time to think of all the what-if’s for long.
The weeks prior I had been in a frantic mess trying to arrange to see a nutritionist up in Ottawa area. I took Aiden for one apointment which we waited a month for at our family clinic. I take time off work to get Aiden to his appointment and wait in the waiting room for 20 mins. Finally, we are called for the appointment and follow the healthy looking nutritionist to her room. I start to tell her my concerns, we have been home for 6 months now and Aiden does not seem to have gained any weight or want anything by mouth. Aiden pipes up and says, “Yes! I do eat strawberries!” Although in my head I don’t think one strawberry will fill his nutritional needs. He is still getting sick at least once a week if not twice even with round the clock anti-nausea medications. The nutisionist finally stops me to tell me that she really dose not have experience with G-Tube feeding. Are you kidding me! I ask her what her recommendation would be. I am very concerned about Aiden’s nutrition and worried he is getting dehydrated again. She says she will do some research and try to put me in touch with the right person. We say our goodbyes.
Over the last couple weeks we have also been in debate on the medication Aiden is on. When he first started getting his abilities to walk and talk back they came like a wave crashing down. Too much to handle after so long not being able to communicate or move. They say this is very common with the posterior fossa syndrome. Aiden has been on a drug called Risperidone for about 7 months now and Orlanozapan before that. When I was first told that my son needed these drugs and googled them I was terrified. How could my 8 year old need something commonly used for schizophrenia?
” Risperidone is an antipsychotic medicine. It works by changing the effects of chemicals in the brain. Risperidone is used to treat schizophrenia in adults and children who are at least 13 years old. Risperidone is also used to treat symptoms of bipolar disorder (manic depression) in adults and children who are at least 10 years old.”
While we were at the hospital there was times it would take 4 nurses to hold Aiden down when he had one of these “moments”. It was very scary, it is like the switch just goes and there is no coming back. Incredible Hulk I have called it before. Since being on the medication instead of having outbursts at a 15 out of 10 we are at a 8 or 9. Aiden is getting better at coming back out of these states by himself where as before it would just be a matter of giving more medication. Which this is the medication now or that he has just balanced out now that life is returning more to normal is constantly under question. I don’t doubt that He still needs something but will be discussing the new systems with the Team to determine if maybe something different would help with the new issues we are dealing with now.
The main reason for starting this blog was to hopefully give a little insight what it is really like to another family and to let them know they are not alone in this unknown voyage. I do not share this lightly but it is honest. The toll of the last year has built up in Aiden. Yes we are home but in some ways this home part is harder then the hospital part. The self hate for his body and himself has been one of my main worries. He hate this g-tube, which I get, it is a foreign object you are pretty much constantly tied to. His brothers get up and run when they want and he is trapped to a machine with a cord going into his body. He cries out he wants to rip in out of his body and has unplugged it with his stomach contents spilling onto the floor. There is times when he tells me he wants to die and kill himself and it breaks me inside. I ask him how he knows these words and what that really means which leads to the an even scarier reply to stab himself. I try to navigate these emotions and acknowledge theses feeling he has. I try to remind him of all the good around him and how far he has come. I tell him it will not always be this hard for him. I tell him he is the bravest boy I know and how what happened to him is not fair but it makes him a stronger person. The difficulties of missing the year of school and being given what he calls “baby work” now is also hard for him to adjust. He may have missed a year of school but I explain that there are two kinds of smart in this world, book smart and life smart, both are equally important but he has more life smart then anyone in his school and book smart can always be caught up on. I say these thing and hope I am saying the right things. Just like right from surgery there was no preparation for this stage of recovery. I know there has to be something I can do, after all he has been through this can not be what takes him down. I the last weeks I have reached out to our family doctor and interlink nurse and Sick Kids and psychotherapist in town to help with these emotions but I won’t lie it is hard finding what is available. A lot of the time what is covered by our health care system takes time to set in place and even then appointments are far and few between. One issue I have ran into with our primary care in Toronto is who do I communicate with. Trying to get a change to prescription or a meeting with psychologist or follow up on speech, occupational therapy, swallowing study, physical therapy, nero-psyc testing I am constantly learning where to go to for what. It is hard but navigating. It was discussed at our previous scan 3 months ago about bringing services back to Ottawa and just leaving the oncology part in Toronto. Over the last month this really seems like the only option to ensure the best care for Aiden. So as I get off the phone with the MRI reminder and I start my list of everything that needs covered in our 1 day appointment at Sick Kids. I send an email out to our nurse there to line appointments up, psychology, hormone test, nutrition, swallowing assessment etc.
So the next week rolls on and we get closer to the date and every day I feel this anxiety creep in more. Then, I finaly come to the realization that this is what the next 5 years of our life is going to be. We will be living on 3 month cycles. Every 3 months for the next 5 years Aiden will go for a scan and then what? It is a slap of reality and a flashback of what he has already been through. All the images and memories I pushed down so deep from the last year surface in the fear that I don’t know how I would ever go through this again. How would Aiden go through this again, how would we all ever go through this again.
I arrange with Josh logistics of taking Aiden down, I will take Aiden and he will watch the other boys. I book the train which turns out to be cheeper then driving as we get a medial rate. Usually I would stay with family in Toronto but because out appointment is so early on Friday morning I book the Chelsey hotel which is only 2 blocks from Sick Kids. It could also have to do with the anxiety that’s been building and I just want to be close as possible to the hospital and get there and get this over with. This is also around this time I hear that Brain Cancer has taken the life of someone I know and it is numbing. I feel my defence mechanism kick in, which is hard to explain but I have started to figure it out. Somehow I remove myself and have a feeling that I am watching my life unfold from the sideline, like watching a show on TV that it is not really real or happening. I feel like I am living someone else life but it somehow gets me through and it is how I have gotten through so far.
That night I pray over Aiden that all the sickness in his body is gone, that all the cancer is gone, that his scans will be clear. As the day draws closer I find myself thinking more and more about life. The day before we are to go I get the news that my uncle has passed away. 2 lives in one week. 2 families left behind. This makes me think about how precious life is and how uncertain it is. All the gifts in the world will never ever match the gift no one can really give or guarantee. It dose not matter how old you are or how nice you are or what car you drive. Life is a Gift! All I want for Christmas is for Aiden to have the gift of Life. To finish school, to have great friends, to fall in love, to kiss his first girl, to find something that makes him happy, to experience the world and to live and be happy.
So now I sit on the train and head to Toronto., Aiden full of smiles and jokes and I take in every moment. And I am thankful for this one on one time with him and try to absorb the now and push away this scanxiety for another day.