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Praying for Boston, and not the hockey team.

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IT’S WEDNESDAY afternoon. My body aches as tension attacks. Internal dialogue continually plays in my head, preventing sleep from being a possibility. Then, finally, my cell phone rings, and I jump to answer. The invisible hands have grasped my throat once more as I see the 617 Massachusetts area code on my phone!

“Hi, yes, it’s Stephanie.” I nervously exclaim.

Dr H.’s deep voice explains the updated situation: “It looks like plan B is most likely to happen.” But, he continues, “The main issue is the approval of the ambulance service needed to go from Spaulding Rehabilitation Centre to Francis H. Burr Proton Therapy Centre at Mass General daily.”

“Why is this an issue?” I defeatedly ask.

Dr H explains, “The Canadian government has issues funding an American ambulance service when Canada has perfectly good ministry- regulated ambulances.”

I had taken my son Aiden into the Children’s Hospital of Eastern Ontario (CHEO) twenty-one days ago for what I had been told for months was “viral fatigue.” My active seven-year-old had been sleeping for endless hours throughout the day. He was starting to have difficulty walking and was on round-the-clock Tylenol for headaches and Gravol to try and combat the nausea that was overwhelming to his young body. An MRI showed a tumour the size of a plum in Aiden’s developing brain. Surgery was performed immediately to release the pressure, and soon after, we were told that the tumour was cancer. The cancer had spread like a serpent down his spine, and “bad guys” spotted his brain. On autopilot, I have survived with a smile on my face to show strength and safety to my beautiful boy. It has been a tornado of doctors, research, waiting, and praying. Waiting to know the next steps and praying for treatment in Boston. Treatment will give us hope for Aiden’s future, for our family’s future. Finally, I am on the phone with the doctor from Boston, but hope is not yet guaranteed.

I exhale at the thought that the potential to give my son the best chance at survival and long-term quality of life is coming down to money. I am told the estimated cost for six weeks of transportation is $24,000. I cannot even begin to comprehend how I would ever come up with this amount. The potential to win the lottery seems very unlikely as I have not left the hospital in twenty-one days to even buy a ticket. The internal dialogue starts up with frantic questions. Do we need to pay upfront? Can we get the treatment and then just declare bankruptcy after? The thoughts swirl in my head as Dr H discusses the advantages of proton therapy, which is not yet available in Canada.

Proton radiation is generally expected to provide equivalent tumour control as Photon radiation offered here in Canada. It is sought out because it has been shown to substantially reduce the long-term effects through its targeted approach. Because Aiden is only seven and still very much developing, a targeted approach could save him from hearing loss, infertility, and the one that hurts the most, loss of independent living.

My heart splinters at this thought. Aiden’s cancer, Medulloblastoma, is one of the most common malignant brain tumours of childhood, but I have been told he has the fourth subtype, which is the worst. Medulloblastoma occurs in the cerebellum, also known as the “small brain,” located at the bottom of the back of the head. The cerebellum is involved in many aspects of human behaviour and function, such as movement, speech and breathing.

Dr H and I end our conversation with him, letting me know he is about to head to a round table debate to argue that the proton radiation and extensive rehabilitation are equally needed for Aiden.

“Can you and Aiden’s Dad try to decide, if it comes down to it, are you able to cover the transportation costs? If you could have an answer by four-thirty when I call back, then we can decide what the plan is.”

The air escapes my lungs as I whisper “Yes” and hang up the phone. Is this even at all feasible? I start to pray for a miracle. I head back into Aiden’s hospital room, curling up beside his tiny warm body on the children’s hospital bed. He nuzzles into my arms lovingly. I want to go back twenty-one days, I want to hear Aiden’s voice again, and I want to get embraced in his hug. I make jokes and try to get Aiden to laugh and smile. This has become a regular pastime of trying to be a comic and get any response I can. I am told automatic functions will come back first with posterior fossa syndrome, which has been true.

The fifteen-hour surgery, a week prior, to remove as much cancer as possible has stolen my sons’ ability to walk or talk. The surgery has left Aiden with what is called Posterior Fossa Syndrome. Posterior Fossa Syndrome only develops in approximately 25% of children after the surgical resection, but I guess Aiden won the horrible disease lottery and has developed the most severe case. Aiden needs to beat this horrible disease and needs the extensive rehabilitation that Spaulding Rehabilitation Centre can offer him.

The phone rings a bit past four-thirty p.m.; I tell Aiden I will be right back and head out of the room into the empty hall. It is Dr H. “Okay, so here it is … It has all been approved!”

“What? Wait a minute. Where is the, but?” I burst into tears.

“No, but,” he says, “it’s all been approved. The way they have worded the contract with the Ministry, it covers Aiden for any care he needs in any affiliated hospital, which Spaulding is!”

I am speechless. I thank him profusely and hang up. I head back into Aiden’s room, and the tears stream down my cheeks. The air in the room is electric as I tell Aiden and his Dad the fantastic news. Tears form in all our eyes, except Aiden’s, because he does not get the significance. I tell Aiden that he will get to ride on a “jet plane,” and a huge smile spreads across his face, and his eyes light up.

Although I am ecstatic, I self-talk myself down. I do not want to get my hopes up until I hear it from the oncology team at CHEO. I don’t think I can handle another ping-pong game. It is just after five-thirty, and I still have not heard from the team. I start to doubt my sanity as I send the caseworker an email, “Any word on Boston?” I don’t mention the conversation I had with Dr H earlier. I need to hear it for myself from this side. I put my phone away, it has been a long day, and I am depleted. I decided that I should probably eat something and start to head out of Aiden’s room. “Ding,” my phone chimes.

“Yes. Give us ten minutes and meet in the Sens Den.” Aiden is angelically asleep as his Dad and I head to the Sens Den, which is down the hall. Our emotions are running high. Aiden’s Dad and I are trying to be there for each other, but everything we say is getting lost in translation. Finally, the caseworker and interlink nurse, Marilyn, who has been a godsend for my sanity, arrives.

“It’s all been approved!” No beating around the bush. The words echo in my heart. “There is a little bit of paperwork to sign, and we are all quite shocked.” The caseworker continues, “We are told Aiden’s case went to the top of the Canadian health -care chain! There are a couple of requirements, such as flying Orange Air as it has a full medical staff, but everything looks good.”

I ask, “When we will leave?”

“Most likely, tomorrow morning, I am working on that piece right now. Aiden has a one p.m. appointment to prepare for the Proton Radiation in Boston on Friday.” I hug and thank Marilyn and the caseworker profusely; tears of relief and hope pour. We head back to Aiden’s room, and I tell his Dad in a panic that I need to see Declan before we go. The thought of not being with my other sons, Declan and Lynkon, is devastating. Lynkon is so tiny; will he even remember me? I try to balance it all but taking care of Aiden and trying to equally be there for our other boys has been an impossible feat. My friend brings Declan down to the hospital that night, and I fall asleep on the small cots with Declan in my arms.

I wake early; the sun is not up yet. I quietly get myself ready in the small bathroom next to Aiden’s bed, who sleeps peacefully. I start to pack as much as possible to make it easier for Aiden’s Dad. He will need to clear out the hospital and Ronald McDonald room when we leave. Our home for the last twenty-one days. I pack Aiden’s and my suitcase from the items we already have here. My phone rings at nine a.m., and I am told the plane is on the route and should be here around ten-thirty a.m. Declan sits with Aiden on his bed, showing him Pokémon cards as Aiden smiles. I look at the clock at twelve p.m.; my heart pounds profusely as a man for transport shows up and lifts Aiden to the stretcher. I hold Declan in my arms as he hugs me tight. “I want to go with you!” he cries on my shoulder. How can I explain to a five-year-old why he cannot come, why his mom is leaving him and why his brother is sick?

The transport man checks Aiden’s vitals one last time, and we all start to follow with sombre steps down the hall. I hold onto every moment we can all spend together, but we need to part ways. They lift the stretcher with Aiden strapped tightly onto the ambulance first. I follow and take a seat beside him. The doors of the ambulance close, and I can hear Declan’s piercing cry as I see him out the small window, engulfed in tears and in his dads’ arms.

I squeeze Aiden’s hand and mask my heart-wrenching pain with a reassuring smile to Aiden. Six weeks, I tell myself, six weeks, and this will all be a horrible dream we will wake up from and be back to normal.

#iHope

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I was walking out of the hospital tonight and I noticed a sign I had walked past 1 million times before, it read #IHope. Some may read my posts and feel the awfulness of the situation, there is a lot of negativity, and it is pretty depressing but in the end I really do have Hope that this is going to end well.  I realized it is so much easier to focus on negativity and it takes much more work to see the good in a situation, to see the light. We are so hard on ourselves, maybe we try something and are not the best or we feel like we could’ve done better on something; it is so hard to focus on the fact that we tried or that we completed something and be happy in that fact.
So many times Aiden would come home from school and say “I had a bad day” and it’s so easy to get sucked into this negativity. I would try to remind him:

“You did not have a bad DAY; something’s may have happen in your day that were not the greatest, make you sad or uncomfortable or angry but that does not make the whole day bad!  Try focus on the good things in the day.

And as I remember this, I realize, I have not been taking my own advice.  So here we go:
1. Aiden said another word!  He said “I can’t!”. I was trying to brush his teeth and he and I were getting frustrated. He was growling at me so I gave him the toothbrush and said, “You do it! You brush your teeth!” In a muffled voice he said “I can’t!” We both froze and looked at each other, both surprised.  I said “did you just say you can’t!” and he laughed with a huge smile. I told every doctor and nurse and anybody that would listen!
2. I recived an amazing message from someone that said, since hearing about Aiden she had gotten together with colleagues and put a package together for Aiden and his brothers. She called it “Project Aiden Smile”. To top it off, she said that when he gets out her and her colleagues want him (and brothers) to have a day where he can ride on any heavy machinery.  If she does not have it, she will get it. I read him the message and he smiled ear to ear. My brother was in the room at the time and I looked over and he had reared up and I could tell they were happy tears. Not only is this a huge motivation for him but also the tug in our heart knowing that so many people are rooting for Aiden!
3. Today I talked with another mom whose son had the same cancer as Aiden.  He went through the same surgery, he had mutism and needed rehabilitation to walk again.  I talked to her for over two hours. We went back-and-forth on stories and it made me feel so good to know that I am not alone in the feelings I have been feeling.  She also gave me a better understanding of what the condensed chemotherapy treatment would look like. Although our cases are different in many ways it was so good to hear another perspective – mom to mom
4.  My brother sent me photos of Declan hanging out with his cousin. He had the hugest smile on his face and I could tell he was having a great time goofing around with his crazy cousin. I am so lucky to know that he is so well taken care of
5. I received another photo from my dad and stepmom who have been taking care of Lynkon. He was down at camp eating sand; just like the good ol’days of summer! I am so lucky to have had such an amazing summer with all my boys at camp.  Catching fireflies, crazy paddle boat rides and a whole community in itself who are supporting us and praying for Aiden.
6. Even though we were put on isolation we still had lots of laughs. It was very comical to watch the physiotherapist, who always Insists Aiden has his running shoes on before he goes to the gym, get in the whole body draped outfit. Definitely not gym attire!
7.  A friend visited yesterday and her son had found these Pokémon gym badges and thought they would be a great motivation for Aiden and his physiotherapy classes – kids know kids!
8. We have had endless amounts of people offer to help in anyway they can!  Whether it’s cooking meals, financial help, organizing fundraisers, donating items, doing our laundry, being a listening ear, driving our boys, the list is endless. I have talked to some parents here who are from 8-9 hours away; we are so lucky to have an amazing community, friends, family and even strangers so close.
9. I received a message on the blog. It was from a teacher at Aiden school who had suggested a communication app called Clicker 7 to help him communicate. We have so many people working together to get Aiden better!
10.  Even though Aiden has extensive rehabilitation in order to sit, walk and talk right now,  I take hope in the fact that he is guaranteed to talk again!  whether it is two days, a month, or year his speech will come back. Everyday he is getting stronger. There are some kids that come out of this surgery and are completely paralyzed or do not understand anything being said.  We are so thankful Aiden understands every single word we are saying.
11. He is now ticklish! We can tickle him and make him laugh,
And finally,
12. Even though this has been extremely difficult, I still have a husband who loves me unconditionally and would do anything for his family. We may disagree at times, which I am sure most married couples do, but we know at the end of the day we are fighting for the same thing, to save Aiden
So everyday I am going to make a conscience effort to focus on the good things. #iHope that the more I focus on the good the less room there is for bad.

Creating Core Memories

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Today marks one month of being here at Cheo. What I thought would be a quick visit and then off to take Aiden to get Bayblades (he had not been feeling well and I thought it would be a good way to meet friends on the playground at the new school) has turned out to be much longer then expected. Encouraging enough, everyday he is growing much stronger from his surgeries. This weekend we were able to make it down to the gift shop where he got a pair of cozy slippers and a zebra stuffy (there is a story behind the stuffy). Although, I know he is still waiting to get to the “Big Toy Store” (before he lost his speech, he kept asking when are we going, when can we go to the store). I told him that we are that much closer everyday. 

“Everyday you work at it,  we are that much closer to getting out of here!”

It is all the small steps I am trying to take the time to appreciate and see. The “teacher”, Redg, came on Friday morning and said “WOW, not sure if you notice as much because you are here all the time but Aiden’s ability to follow around the room has dramatically improved!” And after he said it, I saw Aiden was following perfect with his eyes when someone would talk or come into room. Such sudden changes. Just as I said in the first post his face had changed somehow, I see it is changing again. 

Friday early morning, the artist in me trying paint therapy with him.

I am not sure if our families knew ahead that today marked one month (I did not, I had stopped count right after his second surgery) but it seemed everyone decided to visit today; and it was GREAT! As first when the room filled with Josh’s parents, brother, his friend, and aunt Elli and I knew my mom was coming too I could feel anxiety building (I get weird like that sometimes, the organizer, controller and pleaser in me I think?). Then not much longer I get a text from my brother, “where are you?”. He is downstairs with my mom, his wife, and my ​​two adorable and loud (because girls are just louder then boys) nieces. Oh god that’s allot of people and we had Declan and Baby Lynk here too! 15 people including Aiden, Josh and I. I would like to send a HUGE thank you to CHEO and RONALD MCDONALD for allowing that many visitors!  We took turns alternating people in the room and on the 5th floor in the McDonald Family Room and the Playroom where the cousins had a great time making Halloween crafts and playing games. My brother even ran into good old-time friend (and who gave me my first ever job picking corn one summer) 2 doors down the hall, who was here since Monday as his sons appendix had burst. 

Friday, after getting pressure bandages wrapped around head

The highlight though was being able to give Aiden a hair cut, or buzz cut as you could call it. I had to take off his pressure bandage they put on on Friday and take the scolding from the nurse after but it was worth it. Up to this point he has had half his head shaved from where they went in.

In good hands with Aunt Elli and Aunt Christine

 All week I just kept thinking that he would feel so much better if he looked more like himself. Instead of looking like someone who escaped a psycho institute and got in a fight with a shark! I also thought it would be less dramatic when he started lossing hair from the radiation (sceduled to start October 24th).  Aiden showed so much great control with his neck, getting a hair cut was almost as much work as a physio session but I think more fun?! Aunt Christine helped get him situated and drapped and tucked the sheets around him to keep as much hair off his body as possible. Auntie Elli, the hairdresser by trade, had the professional tools and quickly went to work. I held his hand and told him to squeeze of uncomfortable. There was some jokes, a couple laughs, a couple groans but it went great and I think Aiden really enjoyed it and feels much better. I was told Aiden he was very luck to have such great Aunts and that this was probably going to be one of those memories he will have forever! His too Aunts, in the hospital, giving him his haircut (the last before he starts treatment, and although I did not say this part to him and he did not understand the significance, he will when he looks back on the memory I am sure!) it was a priceless moment. It is a memory I know I will hold forever! 

We are told that on Monday Aiden will be heading to 4 North, the oncology ward. I asked if we could stay where we are one more week until he actually starts treatment but was told no and asked why. I did not want to say in front of Aiden, I just said we like this room but in reality I know it will be much different, VERY strict on visitors AND I want to shelter him from what Cancer looks like for as long as possible. It really is not pretty in the slightest. I spot the children going through treatment at the McDonald House and hold back the tears knowing what is to come. So even more so I am so thankful for today! Thankfull for our wonderful and supportive family who we know loves us so much and are there for us. I know  they are all feeling this just as we are and each in their own way. So I hold onto the memory of Uncle Izaaq’s Boots, the Elephant to join our Jungle, the Hair Cut and all the laughter and the smiles.

“We may not have it all together, but together we have it all”

How do we explain?

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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

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“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. 
​[wpvideo dYajHIkS]​

“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.