#BellLetsTalk I see it all over Facebook. I understand the premise of it and I understand the truth behind it but sometimes when we suffer from depression and mental illness it just feel like talking won’t help. The fear of bringing other people too close or down outweighs anything else. I have tried to be open and honest in this blog and it has been a therapy in itsself. The thought that I could help even just one other person know they are not alone in the suffering of watching their child fight with cancer was my motivator. Now here I sit feeling more alone then I ever have in my life. For fear of bad timing, and making people sad, for wanting to live in denial and hold on to a normal that is being ripped from us again. So here it is…
December 18th – I lay in bed sick with Pneumonia and worry, the phone rings. It was the oncologist at Sick Kids calling. With tears in her voice I was told that Aidens scans were not as they had hoped. The team is devastated and it was very unexpected. They asked if I was alone, is there anyone I could call. They wanted me to come down that week with support to talk with the doctors. Everything inside of me ached as I ramble what is the plan? what are we suppose to do now?, more chemo, what? The oncologist just kept saying she was very sorry and to comedown. I called my dad. As soon as he heard my voice “Fuck No” “Fuck No” tears ripping at his voice too. He would drive me tomorrow. They said anytime this week but what was I suppose to do sit and think of all the worst cases? No tomorrow we would go. I then had to tell Josh I knew he was at work, could I wait till he was done for the day? I sat in my bed, alone in my house and screamed out, how could this be happening again. The pain and emotions just gaining hold So tight I could not breath. I knew Josh should not be alone either so I called him and told him. Broken and shattered. I asked if he would go to Kingston to be at his parents so he was not alone and we could meet tomorrow at Sick Kids. These last months have been so hard trying to get back to normal and start a new life as a single mom and trying to forget the pain of the last year and here is was with unstoppable force.
My brother came over not long after and as soon as he walked in the door I knew my dad had called him. We are not a huge hugging family but he hugged me in my empty hall, in my empty house and I broke again. I pulled myself together shortly and poured us some rye. Push through, deny, push, fight, one foot in front of other. My brother drove me to get the boys at daycare and school. Wiping my face and trying to put on the mask I have grown accustom to wearing. My sister in law and friend came over and we chatted and the kids played and I brought them up to bed and laid down in my bed with them. All the fights I have had trying to get the boys back on a routine sleeping in their own rooms was out the window. I lay tangled in a sea of children’s arms and legs wrapped around me. Tears rolling down my cheeks, exhaustion taking hold but having comfort in the noise of people downstairs and I fell asleep.
I dropped the kids at daycare with my amazing friend able to pick them up after school and drove to my dads in Elgin. Contemplating life and trying to understand what was happening. My body trembled as we switched vehicles and thankfully My dad drove the rest of the way. My stepmom came as well and they were able to change subjects and chit chat and help me ignore, push down, push through. We listened to music, my puppy Arthur cuddled on my lap and soon enough we were there. I observed the familiarity of the street focusing on everything else I could think of as I walked toward Sick Kids. The yellow brick building, green copper roof, big bright new doors, they looked good! Flashbacks of a time that seemed so far behind filled me as I waited for the green glass elevator. They are so fast you needs to go quick. So many times, like many others at the Hospital, I struggled with wheelchair and poles and pumps hooked up to try and make it into the elevators before the doors closed. The elevator opens and a fellow RMHT mom walks in “HI!” I could not believe it as we hug. “How are you?” “What are you doing here” “How is your son?” We both ask… Mom says transplants went well but still here for something else now. This is one of the hardest parts. It’s the only place in the world you will make a friend but never want to see them again! I am now hurting for this amazing strong and inspiring mom more then myself. I tell her Aiden had MRI on Friday and they called to come back. We hug in sadness “I’m so sorry” she says. Doors open and we tell each other to take care. “It’s fucking awful” I tell my dad who is shying in the corner of the elevator, eyes reddened. Down the long wall, past Camp Ooch room, all the memories of Aiden doing crafts and keeping our sanity form as I walk by. Big bright windows, shiny white tile floor, turn left at the 3 large prints of colourful hearts to the sign that says Sears Cancer Clinic.
I was here only 4 days before for Aiden MRI. Everyone was so happy and excited to see how great Aiden was doing. Walking and talking and joking. Colour back in his skin, eye lashes, hair, meat on his bones. I check in with the receptionist, sad looks replace the smiles only days before. Down the room I see another familiar mom, I have told so many people about this family. The little girl is on her 5th relapse. She is a ball of fire, always wearing a purple bandanna. She is on the new Sick Kids commercials she is mighty. Last time I talked to her mom was at the scan previous she was in the elevator and they had just started another trial. I told my parents I was going to say Hi. “Hi superstar! Can I have your autograph” nothing… this fireball was empty, and it broke my heart for the mom never giving up hope and for the little girl that has touched so many fighting this awful war for so long. I chatted with the mom but knowing I had a cold I did not want to get to close she gave each other encouraging words and parted. I could feel the drain and the tiredness overtaking both out bodies. I use to look at other parents and see the drain and sadness and I told myself I was not going to be that parent. This was not going to get me it was not going to win.
After a couple more saddened hellos our name was called and we headed to the back, to the familiar blue pod. I sat on one chair, Josh on the other, a small wooden table separating us.. My dad, sue and Joshes mom sat on the couch. The oncologist came in and our interlink nurse who has been amazing through this all. (Both interlink nurses at cheo Marilyn and Sick Kids Corey are amazing! Thank you more then I can say! ) I had not met this doctor before, she had met Josh before. She introduced herself to me now. I really could not pick her out of a line up if I tried, the room was starting to spin and just like September 16th, 2016 it all just happened in a semi-caunsous state as I try to recall details now. She explained the scans and pulled them up on the computer comparing his scan three months prior to the one only days before. Right there on the first slice the white shone. Like a inch worm glowing on the screen it was there. She took us through 5 different views where they found new growth. Silent tears dripping down my cheeks, I try to comprehend the full meaning of this. Anger bursts in the room, there is a walk out and a walk back in. There is blame shouted and apologies all in the wrong direction. How is this fair I think, how can this be but I am quite. My mind trying to be logical and process. Finally I ask “what do we do what’s next?” We are told that because the cancer has come back so quickly it is not good and the rest of me falls apart. We are given an option of a trial in Toronto less the 10% success rate but we would have to stay in Toronto for an indefinite about of time. How could I do this again? How could I do this to the other boys again? Josh and I agree to send the Tumor for testing to see if Aiden will even qualify even though in my hear and head I know this is not an option. We are told to think of the best interest of Aiden at this point and not ourself. I hear a sound echo, a scream in pain and only after realize it is me. What else? We could move our care back to Cheo and be close to home. They have already reached out to oncologist at Cheo and she is aware of the situation. Aiden could start a oral chemo called Etoposode which would be administered at home.  It is mild and most kids continue on at school and life. I ask how long this would give him and they said they have seen kids up to 15 months on it. There is mention of stem cell but once again low percentage and need to outweigh quality of life. I think to myself that if this did show on the scan 3 months prior it would not have made a difference because Aiden would not have been strong enough for any more treatment. He has just started to feel good, not using his wheel chair, staying awake all day, starting to want to eat food again and vomiting less and less. I was finally having hope for the future. How can I put him though this again, how will his body even do it?
We go over a couple more things. My mind goes to Aidens wish. I had said we would wait till next year but he is feeling good right now “How soon can we do his wish” I blurt out to Cory. She smiles at me and leaves the room to talk to the nurse and doctor. Returning she says that Aiden has the go ahead and she will send an email right away. If they can get the paperwork to them tomorrow before Christmas holidays it should move pretty fast. I feel a relief and I feel empty. There is not much more to cover and with Christmas days away we are told to enjoy this Christmas  and not to worry that something will happen over night. I ask that they make sure everything is ready to go at Cheo for after Christmas if this trial falls through even though I know this is not a viable option. We get up, I give Josh a hug and we part ways. A zombie I backtrack down the hall, elevator, doors, street, truck.
The Toronto streets are buzzing as it is now rush hour. I mention getting a drink and something to eat, My stepsister works at Princess Margaret beside Sick Kids in the Cancer unit and I would like to talk to her about these trials. I also go onto my email and look up Children’s Wish and send them a email to contact me ASAP.  The pub is packed and we wait at the bar for a seat. I order “The most boozy drink you have” – Black Russian I am told. OK. the crowds of people celebrating Christmas cheer all around, oblivious to this other life so many are ripped apart by. The place is loud with laughter and buzz and I kinda like it, drowning out the demons in my head. Just as we get a table my phone rings and I head outside to hear. It is Children’s Wish, “Its weird, I am usually not here this late but just saw your email and then my phone rang and it was Cory so I though I better call…. Yes I can get the paperwork to them tomorrow, how soon do you want to go? I leave on holidays day after tommorow so we can get all the medical stuff and paperwork ready tomorrow.” I tell this part of the day because it really was a surreal moment. I just experienced the worst moment in my life and heard words a parents should never hear and I am just about to give up and then I get a glimmer of something larger out there.
5 hours later I get back to my bed and pass out. I wake up the next morning and paint the mask on. Push through, one foot in front of the other. I head to work and sit at my desk focus on the task at hand. I know no amount of make up will take away the puff and stinging redness from my eyes but I push through for most of the day. The next day is Aidens Christmas Concert. He does amazing. Last year he could not even stand or sit for that mater and here he is standing on stage at his concert. I smile and break inside. “He is doing so great!” “Amazing” “Really coming along these last weeks” “Yes, he is doing great” “No, have not heard back on MRI yet” I reply, the lines that come too automatic. The next day we had planned a night with my best friend I had not seen in forever and her little girl same age as Aiden. We were to go to dinner and see the lights at clover park. I am trying to keep it all together. To hold onto this life I had begun to rebuild. It really is amazing what good make-up can do. The kids have an amazing time, me and my girlfriend have an amazing time catching up. Again “I have not head back from MRI” The night was so great I could not bear the thought of ruining it and causing this pain to someone else so I keep it all inside and decide we will not tell anyone till after Christmas.
December 22nd – Three days after meeting at Sick Kids and the start of Christmas holidays, the kids had been asking for a sledding party. Well you know what! Lets do it because I really do not know what next month will look like! I wake up at 5 am and draw out invitations for the boys to bring to their class. I spend my energy focusing on making this the best Celebration of Life I can! Celebrate the time we have together, celebrate the beauty of winter, of friends, of everything good in this world. You do not know when it will be ripped from you and at this moment I either think of the good or fall into despair. I hire a Facepainter, and Saturday morning pick up 200 Timbits from Tim Hortons (thank you), borrowed a large coffee craft from work for 100 cups of hot chocolate and blare christmas tunes it is a winter tailgate party. It truly was perfect. Thank you for all who came out and everyone on the hill that day who got their face painted and had a cup of hot chocolate. Aiden was full of smiles and up and down the hill he went over and over again with friends. It was a better present then any money could every buy!
The last few weeks have honestly been a blur. Christmas came and it truly was the best Christmas all things considered.We were surrounded by great friends and my amazing family who has been so supportive.  The following week we went on Aidens Wish Trip and it was amazing ( I will have a post at some point about it). Then the whirlwind of events seemed to slow and now I know I have no more excuses except I am so sorry to share this news. But I feel like I am lying to myself and everyone at this point and I don’t know what hurts more. Aiden has started the oral chemo which I give to him nighty. We go down to CHEO for blood every Friday. He will be going into his third week coming up and already I can see the toll on his body. He has started to get sick daily again, this morning all over himself and the dog as I was driving him to my great friends for the PA Day.  Next week will be the toughest and then he gets a break for 7 days to build his body back up only to knock it down in the next round. I have had to have meeting with the school about signs to watch for and just let them know that he was starting back on chemo again which has been a hard thing to admit. I almost thought that this would be different because last week he was still feeling great but this week I see the colour start to fade and the black under his eyes grow. I pray and beg every night to take the cancer from his body. I could not bear the thought of telling him. He was worked so hard to gain his body back. I envisioned a carpet being pulled from under someone just learning to stand. Like any parent, protecting your child from all the pain in the world is our number one goal. Unfortunately and fortunately Aiden is a smart kid so last week at CHEO the oncologist asked Aiden if he knew why he was coming back down here. My heart stopped. He said “Yes” we looked at each other, puzzled… Why do you think… to which he replied ” My treatment is not finished yet” I took a breath of relief and sadness in the fact that it was true. Aiden has not really gone any amount of time without stuff being done to him. He is still 90% g-tube fed, takes medicine morning and night and goes to physio and OT weekly. What is one more drug through his g-tube and a poke once a week when you just went through the last year unable to communicate and move and had all kinds of procedures done.
I can say that I am so happy to have this time with Aiden as Aiden, he is comical and witty and I think back to the months when we could not move and the silence of him trapped in his head. I could not bear to think of going through that again. At least now he can tell me how he is feeling and ask questions and have as much decision making as a 8 year old should have. I can give him a hug and he can hug me back and tell me he loves me. I do not know how the next couple months are going to go so I am just trying to appreciate as much as I can right now and keep life as normal as possible for as long as possible. Please no pity looks or telling me I am strong just live life, enjoy moments, stop and look at the sunset or the sun rise on a pure snowy field. Spend time with your children off and with friends and don’t hold grudges is what I am asking.

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.

 
 

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