How do we explain?

For the last week we have contemplated how to tell Aiden. How to tell him that he still has more to do. How do I tell him something I do not fully understand myself? I tell myself that I thought his rehabilitation would be further along and that he would be talking by now and that is why we held off telling him. But it now feels like a lie or a secret we have been keeping from him. Trying to shield him from the truth. I feel like he already know that he are hiding something. I don’t even know how to bring up the conversation. How do you tell your kid they have cancer?

He is eating little pieces of “Bulla” I dip in milk and feed to him. OT came to watch and she was shocked at how well he was able to control the food in his mouth. They are really tiny bites but he is doing great and everyday that much stronger!.

We met with the oncology team today as they are going ahead and trying to make plans for radiation and chemo. I tell them we have not told Aiden yet and tears start to pour. I just want to let it out, I feel my strength slipping away but I hold back with every fibre in my body.  I say, I do not even think he knows what Cancer is, she looks kind-of surprised. She asks if he has ever had a grandparent, a uncle, a friend who has gone through it. I say no. She asks if through school he would know who Terry Fox is, that maybe I could relate it to him? I say maybe last year but he was in grade one, I am not sure what we would remember and I can’t ask him because of the mutism. The caseworker asks if we want her to come and help explain after this meeting. I say YES maybe it is better coming from a professional. I have imagined what the conversation would look like, what we would say and I just see myself breaking down crying. I feel like I will not be able to get the words out to explain to Aiden what is happening. My husband thinks that we should tell him ourselves, explain it to him without the professional help. I am just scared that we will bombard him with information, that once we start telling him we won’t be able to stop and we will give him too much information or make it sound like he is in trouble. 
I just wish that he could ask questions, I wish we knew what he was thinking, what he knows already. I am having such a hard time with the rehabilitation. I thought he would be so much further along right now. The idea of him having cancer is almost 2nd fiddle to the pain I feel when I see him not being able to walk, talk or eat. They want to start radiation on the 24th of October; they want to fit for his mask tomorrow, we know time has run out in protecting him from the truth.
After the meeting we go back to the Ronald McDonald House, my best friend and her daughter Izzy (same age as Aiden) are with us. We sit down together and have some dinner. I tell my friend about the meeting and my concerns with telling Aiden. I mention about the Terry Fox suggestion but I am not sure what he would know about him. We ask Izzy what she knows about Terry Fox, she says “He was a man who walked across the country and dipped his toes in the water” we ask her if she knows why? “She thinks for a moment, “he had cancer” and anything else we ask “he died” This is not the example we are using!!!!’
On our walk back to the hospital my husband and I do a run through on what we will say. We don’t want to use any words like die (the cells do not die). We do not want to give him a time frame (6 weeks radiation, 6 week break).  We do not want to mention Chemo yet (just that he needs more treatment). We did not want to tell him he wouls not need more surgery (because we did not know 100%)… back in Aiden’s room, knowing we need to do this.

Email reply to our caseworker who asked how it went:
The talk actually went pretty well. He seemed to understand. We used a yes/no app on the iPad and we could ask questions to him to see what he understood. We explained that the “bad guy” had a name – Medulloblastoma, it is also called cancer- he did not know what cancer was or heard the word before. So we explained that cells in his brain keep growing and growing. Usually these cells leave your body but they didn’t and they have grown so much they became “bad guys”, that is why we needed to do the surgery.  We told him he still had “bad guy” left and that he needed to do treatment called radiation. We told him he will prob loose his hair and be very tired. And he will have to stay very still and will go into a machine similar to the MRI where they shoot invisible rays at the cancer. It went much better then we had expected.”

We also told him that we need to go tomorrow to get fitted for a mask to help keep him still and another CT scan but not to be scared and mom and dad are here for him. But that it is ok to be scared or sad because mom and dad are too and tommorow we will have a sign you can do if you get scared and want a break. We told him how much we love him and that yes this really sucks but he is so brave. We also told him that he was doing so great with his physio and speech/eating and we are so proud of him. I tried to assure him that this extra treatments does not mean we need to stay in hospital any longer then we would have had to. That we still need to work on his walking and eating so that we can leave the hospital. We can do the treatment whether we are at home, or across the street at Ronald MCDonals house it’s just a matter of him building his strength back up and just keep doing what he has been doing. We said we had a movie clip he could watch later (Clip on Radiation) to explain more but asked if  he understood so far and he pressed “Yes” on the app So we left that part at that.
ALSO, He seemed in extra pain last day or so and kept holding his face with a whining sound. We used the app to ask if he was in pain, “Yes” is it your mouth “yes” (we figured out that he has a tooth ache!) we asked him to squeeze dad’s hand when I touch the soar tooth. I pressed on each tooth on the bottom and got to a molar and he squeezed hard! They are suppose to send a dentist tomorrow! Hopefully this could explain some of his extra discomfort lately. 
We are planning on telling Declan this weekend….

Thank You

Aidens passing has been incredibly difficult but a lot less difficult because of the love and support we have receive from family, friend and community. Thank you to everyone who has sent meals, condolences, and donations so I can take this time I need now to grieve and take care of myself and beautiful blended family. I am so incredible grateful for the support we have received.

Stephanie (aka MamaOutpost)

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  1. Debbie Dermott says:

    You both are wonderful parents. Beautiful words Stephanie. You are all in my prayers! Xo

    1. Thank you Debbie

  2. Carolyn Mountenay says:

    Hi my name is Mrs. Mountenay and I am an Educational Assistant and worked in Aiden’s class at R. Tait. If you have a resource for communication ask them to look up a program called Proloquo2Go which is a program that will help him communication using pictures and voice output. I went to a course years ago and it was fabulous. It is used on an iPad. It will need to be programmed but you can keep adding pictures that relate to him and his environment. It will give him a wonderful feeling knowing he can talk to everyone. Just a suggestion. I hope it helps! Take care and give Aiden a high five for me.

    1. Thank you Carolyn, will check out for sure

  3. Carolyn Lalonde says:

    Hi steph
    Shane and i have thought about you guys a lot. The girl ask excpecially Chelsea about Aiden all the time please know you are in our thoughts and prayers. I use the same app Mrs. Mountany suggested at work we also use board maker a lot to use pictures to communicate . If I can do anything to help let me know

    1. Thank you very much we have played with a bunch of apps so far selections of a max of 3 work best we are using SoundingBrd and I can do YES No. we also working with him on making sound when he actually wants to say something and not just whining lol a trait most kids could learn I am thinking lol thank you for your messsage

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