October 5th
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October 14th
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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….
The Mask
“Anxieties race as start date speeds upon us. Denyal still lingers but reality slowly sets in.”
In less then a week Aiden will start radiation. I try to imagine what it will be like, what will our days look like? Will he get extra tired right away? How long untill he losses his hair? I still feel like we have not prepared him well enough. I feel like there will be excruciating pain we do not know about. I feel like it will be like coming out of the second surgery all over again. The guilt for not preparing him better but we are unprepared ourselves.
Last week Aiden got fitted for his radiation mask. We took the long track from Cheo through the Ottawa U corridor to The Ottawa General to Radiation south only to find out we needed to backtrack and go to Radiation North. Once there, Aiden was moved from his chair to the cold, hard CT table. He lay on his back in what looked like a blue bean bag cushion with the back of his neck and head custom fitted into a mold specific for him. They then had him stay very still as they hook the bean bag to a “vacuum” and suck the air out forming it to his body. The whole time I tried to keep the mood light, pulling out smiles when I could and encouraging him with my words.
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“Stay still hunny you are doing great, squeeze my hand if you need a break for a minute”
They asked Aiden what we would like his mask painted as – I had suggested Pickachoo and he gave a huge smile which I took as a yes. They then warmed up what looked to be a flat sheet of honeycomb and told Aiden to lay perfectly still as they placed it on his face. Telling him to close his eyes and it would be warm, not hot. Just before they put it on his face he gave my hand a huge squeeze, I told the team to give him a minute, after a short break we asked if he was ready again. It has been so hard with communication; even when I am pretty sure what he would say or feel I still doubt myself. I try to focus on making him as comfortable as possible and putting myself in his shoes
I could not imagine, as a 7 year old, having to lay perfectly still, on a hard surface, in a darkly lit room. Strangers around me as they put something over my face. I cannot even imagine how scary it must be for him
I was then asked to step out of the room while he went into the CT scanner. He was doing so good not moving, I have never been more proud of him. I could watch on a black and white screen him in the other room. There was a button I could push to chat with him (whenever I say “I am getting pretty good at chitty-chat-chat” he always smiles). The nurse was coaching me on what was happening. I explain it to him over the intercom, giving him encouraging words all the way through. On another screen in this room I could see the scan of his body. His body is severely crooked which I inquired about. They said he would have to perform the CT scan every time he went to radiation to make sure he was lined up with the markers and because as he progresses in this Physiotherapy the goal is to get his body straight again.
The actual scan did not take very long and soon enough we were back in her wheelchair on the way back to Cheo. To see Aiden so drained from the track to and not even getting the treatment yet is frightening. He is not the kid that ever wanted to go to bed and now all he wants is his bed. It is becoming very real the closer we get to treatment date.
Living in Two Worlds
I have been going into work for a couple hours a week to train an office assistant to help with my previous duties while I am unable to work. My work has been absolutely amazing and supportive and I know I am very lucky to have a family like atmosphere. One of the first things the social worker here offered was to write a letter to our employer. I chuckled and said this would not be necessary. My manager, “J” was the one who told me not to leave CHEO until I had answers and she was the third person I called when they first told me they found a “bad guy” (Even before my own mother). As I have said in previous post she is always there to offer support, comfort, or a slap in the face when called for.
Our perfect little family of three boys! Seconds later they were fighting but they look picture perfect here and they really are!
Being at work for the few hours today was such a great feeling, normalcy. I huged my comfy black “leather” computer chair before leaving, hollering “I don’t want to leave, I just want to go back to a month ago!” A month ago we had just announced that I was promoted to the new general manager position as “J” was retiring in December after 27 years. A month ago I was on top of the world. I could see my whole future mapped out – I had the perfect family of three boys, would work 8-4 with meetings which are sometimes more like a social night out with friends, more time with kids (I had at home business of bookkeeping and graphic design on side so when I was not working at work I was working at home so when I got the new position and pay raise I told my kids mommy did not have to be on her computer always at home anymore which they and I were very happy about), I visioned owning a house in the near future, weekends off and just a really normal life, in a job that I absolutely LOVED for the next 27. Then everything changed.
One of the first things “J” had said was “she is retiring, not dying” and could stay on longer as needed. This has also been hard to accept to sacrifice her retirement for me just seems like to much. How could I ask her to put her life on hold just because mine is? I had told my husband that if we do the year long treatment I need to prepare myself that I might have to go back to my old position. How could I expect them to save a position for that long? And this is not a spot where there are many other employees to pick up slack. I have been the only other paid employee for the organization in 24 years. When I started there, 4 years ago now, it was a government funded temp job and when my contract was up they created the position for me.
When first meeting with the social worker, oncologist, and case worker I had asked about working during the treatment and they said this is not really an option as Aiden would need constant care. Even if he did make it back to school at times he could get sick or just be too tired and then need to stay at home with caregiver. The timing of this could not be any worst. Not like any timing would be good but I had just returned back to work after 52 weeks of Mat leave so for assistance programs, such as critical care benefits, I did not qualify for because I did not have 600 hours. Also, my husband had just started back at school in his final year of a three year course at Algonquin College and he only had OSAP as a source of income which he already received for the semester. We had considering him taking the year off but fear he will never complete it if he does and would just have a huge OSAP loan to payback. I write about our financial situation not for support but to possibly let someone in a similar situation know they are not alone in trying to figure out what is the best for their family. How do you balance finance and work with a kid who is in the hospital. How do you balance who will be the caregiver and who will provide income and care for other children?
Letter from Mayor of Ottawa congratulating me on my new position
Being in the hospital for a month now it is easy to forget the world that goes on outside or what life was like before. On my desk today there was an envelope addressed to me. I opened it when I got into my car ready to head back to the hospital, it was a personal letter from the Mayor of Ottawa, Jim Watson, congratulating me on the new position. I thought wow that’s pretty cool but I could not hold the moment for long as right then Josh texted me saying Aiden had a fever and large bulge in back of head, they were taking him for X-ray and another MRI; also that they had come and wanted to fit Aiden for his radiation mask. We had not even told Aiden that the “bad Guy” is cancer and he will need treatments yet. How quick I was flung back into what is the reality of my life right now! I feel like I am living in two different worlds and somewhere in between.
Waiting in hall for X-ray and MRI. We showed him the letter mommy received for Mayor of the City and he gave a huge smile with no words even spoken I knew he was proud of me.
Happy Thanksgiving Weekend
Although our thanksgiving was unlike any other we were able to spend it all together at the Ronald McDonald House. It was the first weekend we were all together since we first came to Cheo Sept 16th. There was so much to be thankful for. We had lots of laughs, great visits from family, and the house put on a whole turkey dinner with all the fixings (and no prep or clean up. Only difference from being at home would be the wine was missing) It was a bit getting use to the change and figuring out logistics of being here with young kids but we did very good and had an amazing weekend. We have 3 amazing boys, all unique and special in their own ways and I have never been so Thankful for family.
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No Words
How is Aiden doing? The concern and care we have felt since we first found out Aiden had a brain tumour has been remarkable. Our freezer is full and we have had shoulders to cry on. From the surgery his recovery is going great! I can not compare him to the boy he was a little over 3 weeks ago but compared to the Friday after he came out of the 22 hour surgery he has made leaps and bounds! He has started physio everyday and everyday he gets that much stronger, he may never be an all star hockey player but he may not have been anyways or I really don’t know, he still might be. He is still on feeding tube but today he had a couple tastes of apple sauce and closed his lips and moved his jaw and swallowed, so we will continue to build on this everyday! He has not said any words yet but everyday more sounds are coming. The best is hearing his laugh and yes we hear it often (I have never been more of a comedian and my heart now lives to get that smile and hear that sound). All of his witz are there. He smiles when we tease about the “cute nurses” or he “fake sleeps” when the neosurgeron comes it for check ups and he does not want to do it. He is still Aiden in so many ways. And everyday josh and I are learning with him. Learning ways to communicate without words and learning to read his body language or face better everyday. It is all coming back slowly but surely. So when people ask how is he doing he really is doing great!
That being said, Last Friday, josh and I heard the words no parent (or anyone) should ever hear…. The pathologist report came back and Aiden has Medulloblastoma, a cancer. It is not very fast growing but there is growth on his spine and there is debris in his spinal fluid so it is considered high risk. They are recommending treatment of radiations for 6 weeks, break of 4 weeks and followed by Chemotherapy, this treatment has about 70% success rate, which I asked, and that is good. There really are not many options in this situation as they want to make sure they kill it all so not to grow back as it becomes more difficult to kill after. We are looking into other options of treatment to avoid the long term effects of radiation and what is in the best interest and quality of life for Aiden and our whole family. We are still figuring out what this really means and how we are going to do it but I do know since finding out Friday and trying to hold this all in and then now, slowly sharing what is happening a huge weight has been lifted .This has been allot to process not only how to treat but telling our family, our other children, our friends and even Aiden. He is doing so well we are devastated to have to put him through that much more. This is something we have realized we can not keep to ourselves and need stronger people around us when we can’t be strong.
I have always told Aiden “Never let anyone tell you you can’t do something, you put your mind to it and you can do anything. It is often after the biggest hurdles the greatest rewards are just around the corner” and no more has this been true nor will I have to take my own advice!
Thank you to our friends, family, community for all for your support and love. We have won one battle now we are fighting the war but Aiden has proven already he really is a “small fiery conquer!”
Medulloblastoma is a type of brain tumor. A brain tumor begins when healthy cells in the brain change and grow uncontrollably, forming a mass. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body. A benign tumor means the tumor can grow but will not spread.
The brain and spinal column make up the central nervous system (CNS), where all vital functions are controlled, including thought, speech, and body strength. Medulloblastoma begins in different cells in the cerebellum, which is the back of the brain. The cerebellum controls body movement and coordination.
Medulloblastoma occurs most commonly in children. About 18% of childhood brain tumors are medulloblastoma. Approximately 70% of all cases occur in children under age 10.
Overall, the 5-year survival rate for children with average-risk disease is 70% to 80%. For children with high-risk disease, the rate is about 60% to 65%. For infants with localized disease, the rate is between 30% and 50%.
Source: Cancer.net