1 Month in 3392 words #BellLetsTalk

#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.

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