Stephanie's Development Site

Just another WordPress site

"Finally a F#&%ing Break!"

by

I really do not know why this post has taken so long, this last part of this voyage has been difficult to say the least and I have been having a very difficult time processing it all. I have tried to be positive but it just seemed since December it was bad news after bad news.  This last MRI I prepared myself for the worst. We had even talked about taking Aiden off the Chemo if it once again showed it was not working. Seeing the strain the chemo puts on his body has been so heartbreaking, every round just getting harder and harder to see him go through. I have been so focused on creating the best experiences for the boys and memories, living life to the fullest with the time we have. I look at it now and I see it has been a crutch for me to cope. If I just stay as busy as possible there is no time to process and grieve the relapse.  Cancer really creates an unreal world that my writing ability is just not at the level to properly portray.
IMG_8367Aiden went for his scan May 4th and we were fortunate enough to have a friend offer us their place in Florida for the following week. Why stress in the cold of Canadian spring when I could stress on a beach with warm sunshine? Off we flew, Declan, Aiden and myself (I’m pretty crazy but not crazy enough to take all three by myself, sorry Lynky)  It was so nice and relaxing, having sun on our skins after so long in hospitals and the long winter.  I did not want to leave, I liked this unreal life where it seemed our problems were so far away. As our glorious week in Florida was coming to an end I even emailed our case worker the day before our flight home to  ask for preliminary result. Why not live in this dream of beaches, sunshine and palm trees if this is the time we have left? Our case worker messaged back saying we could stay till Monday but Dr. J would like to do another round of Chemo. What this meant I really did not know. Was this good or bad news? The despair of hearing your child is terminal with an unknown timeline is unexplainable. My mind and heart has played tricks on me so many time as I have tried to navigate through this. Sitting on the flight home I even prayed that the plane would just go down. One clean sweep and this pain would be over.IMG_8810
I really had prepared for the worst. As I drove to CHEO Friday morning, a beautiful sunny day, I could not push the tears back down as I thought of everything Aiden has gone through. Trying to imagine how I was going to do this next part. Josh was taking Aiden to the hospital and we would meet up there to get the results at Aidens appointment.  I told myself that this was my moment to allow myself to cry, alone in my car. All these thoughts and more raced through my head as I drove down the busy highway, tears staining my cheeks. Through this all I have said I hate when people call me “strong” maybe because I really don’t believe it but at this moment I see it. I see the strength it takes to push down the tears and show no fear as I enter the parking lot at CHEO and to smile and laugh with Aiden like this is all just normal.
IMG_1050I enter the MDU unit and we do Aidens blood work, I see familiar faces and it is an evil homecoming and security at the same time. Finally, we are called back to the room. Concerned, I ask the nurse practitioner if Aiden should be here. Was the team of people going to come in like last time. You know it is bad news when they fill the room. I was assured not this time and DR J, our oncologist, would be in shortly. The nurse examines Aiden and we review concerns and questions. I had asked for hydration for Aiden so they get that hooked up. Aiden is pretty much passed out on the plastic hospital exam bed by this point as Dr. J finally comes in. Right to the point, Dr J tells us… “THE SCANS LOOKED GOOD!” What!?!?! Did I hear her correctly? She pulls up the images on the computer screen in the corner, saying there is no new growth and some areas are even slightly smaller with only one area that is questionable. Josh goes over the scans on the screen with the doctor, which I really have a hard time even distinguishing what is brain or shadow or “bad guys”. I really don’t even care what it looks like on the screen as long as the doctor says it looks good that’s good for me. I don’t even know how to respond really. I ask why, what is the difference now. Dr J, I think a little surprised herself, suggests the new chemo drug he started the last month. The one they never offered before because “too expensive” until I begged that there had to be something else. I try not to dwell on the what-ifs but it is very hard sometimes. The only other difference is higher dose of cannabis oil but I don’t think Dr would ever agree to that and not sure I really do at this point either. Either way I am in shock.
Dr J then mentions that The radiologists from Boston sent her an email this week asking for a blood sample from Aiden to do testing. I guess because he had such severe radiation burns and his hair fell out on etoposide which is unheard of the Boston doctor would like to fly to CHEO to  collect blood and bring it back to Boston. I immediately say yes not a problem, joking that if he wants to bring us to Boston that would be ok too! Any test that is non invasive and could possible help Aiden or others we have opted for so far. I still really believe there is a greater meaning or reason or purpose to all this whether to build awareness, educate, to help another child or parent or to aid in research. I need to believe in this or anger and bitterness and cancer will win. IMG_9330
The doctor leaves, I ask Josh if he would like a coffee. Aiden fast asleep at this point still hooked to hydration for the next hour. I head out of the room and see a door opened a crack in the exam room next to us; a beautiful Almonte mom playing with her daughter! I rush over to share the good news and tears roll down my checks as we hug! The Cancer ward really is a community onto its own. Being able to share these feelings with someone who totally gets it, the cheer and the pain that is unlike any other, has been a huge part of this voyage. With huge smiles and hugs we part ways and I head out the MDU unit shaking at this point. I pull my phone from my purse and call my Dad. He has been with me for the last 2 MRI results, “The scans were good Dad!” I cry into the phone. I believe the response was along the lines of “no fucking way your kidding” and I can hear his voice crack too. “Fuck yeah! Finally a god damn break!” excuse the language but it’s brutally honest. I am still shaking and tears pour from my eyes as I hang up the phone. I really do not know what I am doing at this point. I go get coffees at the cafeteria in my own little bubble of happiness, disbelieve, shock and relief and head back to Aiden, still fast asleep in the exam room. I give him a kiss and head out, it is Josh’s weekend with the boys so he stays with Aiden and waits for the hydration to go through and prescription renewal to start another round of chemo but at least this time there seems to be hope.
I look back now a week and a bit later and actually laugh at how out of it the news made me. I did not even ask about another MRI or another appointment or what this really means if anything. This last week I have cycled through thinking about it and not thinking about it. To open myself to hope again or not? I still don’t know if I truly believe the good news or not it is hard to feel and accept this happiness when I know it can be so easily taken. Everyday truly is a gift and not to be taken for granted.  Maybe it was the Florida sunshine,maybe a greater power, or maybe just seeing through different lenses now but Aiden seems to be doing much better too. We went to our trailer and he walked all around and even ate real food. He has been in school for the last week and his EA said he had a fantastic day. and he did not even nap! I have explained to him that his scans were good and the medicine is working.  I’m sure the next week when the chemo really takes effect and hits his body  will be a different story but as they say one day at a time and this really is the break we needed. Aidens next appointment is on the 8th where I can go over my list of questions but until then I guess we just live and continue on and love my “fiery little conqueror” with all my heart!
IMG_8802 2
 
 

Shave for a Cure

by

On Monday,  The University of Ottawa Faculty of Medicine Smiling Over Sickness Group hosted their annual Shave for a Cure event in support of Childhood Cancer Canada. Every year, medical students raise funds, cut their luscious locks and shave their heads in support of Childhood Cancer Research. It was an honour to speak at this event and share Aidens story. Even more so to have two of Aiden’s school mates raise money and shave their heads for this cause. Thank you Emily and Bella! The event raised over $26,000 this year!

 “Just Keep Swimming”, this has been my go-to saying through this voyage. September 2016 our family was thrown into this whole new world I knew nothing about. I had no clue what cancer was beside what I vaguely remembered from grade 11 biology class. Aiden had been complaining of headaches, sleeping a lot, frequent vomiting, and eventually unsteadiness walking. I had taken him to our family doctor, paediatrician even psychologist over the summer. We had no answers beside possible “viral fatigue” or a learning disability. I finally took him to CHEO, retelling the same story I had told so many times, they immediately sent him for an MRI. I will never forget when the doctor came back to the room telling me “we found a tumour on his brain and lesion on his spine” my response, “your joking right?” I think I was expecting cameras to jump out, how could this be real. And ever since that moment we have not stopped paddling trying to stay a float. To find safe land to rest on.
Aiden went for surgery almost immediately where after 16 hours they were able to remove a large portion of the tumour on his cerebelum, the lower part of his brain, also the part that effects motor skills, balance.  This surgery left him with something called Posterior Fossa Syndrome. He had lost his ability to walk, talk and swallow.  I knew he could understand and hear he just could not get anything out. This was devastating and I was told it could last anywhere from a couple days to 52 weeks. The tumour resected was sent off to pathology which came back telling us it was a type of cancer called medulloblastoma. One of the most common brain cancer in children. We were told radiation and chemotherapy were the only option. The side effects of Photon radiation offered here in Canada were devastating, no independent living, infertility, high likelihood of secondary cancers in other parts of the body.  After researching other options we learned about Proton radiation available in Boston which had less secondary side effects and more exact targeting. There is a lot more to this story but long story short, Aiden’s dad stayed at home with his two brothers, Lynkon 2 and Declan 6  and Aiden and I packed up and flew Ornage medical vac to Boston for 6 weeks of Proton radiation at Mass General and Intensive Rehabilitation at Spaulding. We traveled in ambulance everyday back and forth the Proton centre where Aiden was sedated everyday for treatment. He suffered such sever radiation burns down his spine that they cancelled his last treatment with fear of damaging with brain stem. While at the centre there was map on the wall with little stickers from where everyone came from and there was stickers from all across the world. Just before Christmas that year,  we finished radiation and came home for a break before we headed to Sick Kids in Toronto for intensive chemotherapy and more rehabilitation. While at Sick Kids they offered to try a “sleep aid” called zopedine on Aiden,  it had shown positive results in bringing speech back in some cases of mutism. I was told it would either work or not work. I have gone almost 6 months not having one sided conversation with Aiden, anything was worth a try at this point. Within 20 mins of giving Aiden the “sleep medication” we had our first real conversation while watching Aladdin, “I wish I had a genie in a lamp.” SO DID I!  It was loud and clear! His speech has progressed ever since.
After the second round of chemotherapy Aiden had a slight hearing loss and they decided to cut back one of the drugs – I asked if it would be ok and  if it would still work. They said they give children the same dose, sometimes higher, as adults and that  kids are much more resilient not to worry.  We stayed at RHMT and went back and forth to Sick Kids for appointments, numerous MRI’s, running into Emergency in the middle of the night because of fever, extreme weight loss, finally treatment ended and we came home to Almonte after 6 months.  We were told scans were good. Aidens appetite returned, hair regrew, weight gained but thinking we had beat this, that we had found our dry land, was short lived and December 2017 scans showed new growth. Just like we were swimming again.
What was left from Aiden’s resected tumour was sent for testing to see what trials were available and we were told to think of quality of life at this point. Being separated as a family for the last year was hard enough, not only on Aiden but with two younger siblings. We decided to return care to CHEO to be closer to home. We started an oral chemo to hopefully slow growth at home as well as canabis oil which I was dead set against before. I remember our last scan visit saying to the doctor, “I really can’t believe that there is no other treatment options available. One of the top cancers in children and this is all you have to offer!”
I look back over the last year and half and  I still can not believe what has happened and is happening. I have tried hard to stay positive and focus on the good around every chance I get. Trying to appreciate all the moments that make up life so much more. We have tried to create as many positive experiences and memories for the kids through this. One thing I always take a moment to reflect on is that we are not the only ones this is happening to. Childhood cancer is not as rare as I once believed. The hospitals are full, children are having their time stolen from them everyday, parents are searching for more and better options from around the world.  To everyone who helped organize this event and to all those who have raised money and are shaving their head today I thank you! There needs to be more research in childhood cancer, more awareness and better treatment options. And until there is we just keep swimming and never give up.”

Why not?

by

Sitting on a train, this time so different. I am not heading to Sick Kids (well not really) I am not lugging a wheel chair and feeding pump and meds. I am not sitting with a sick child sleeping on my lap. I have myself and headphones. I am smiling, I feel worry free, I feel happy, am I allowed to feel like this?
I am watching people, wondering where they are going. To work, see friends, family, sporting events, hospitals? They all look pretty normal whatever that means.
I picked up a hitch hiker on way to train station, everyday he hitchhikes to smith falls to methadone clinic. He lives in motel his girlfriend has a 16 year old son but mind of a 5 year old. “Stay strong man good luck” and he gets out of the car.
New parking system at train station, more talk with strangers. “Oh we have to pay to park now” “when did they put this in” everyone says the same thing as they come into the small train station room, causing laughter. everyone seems happy and cheery. Small chit chat about this new device. Can I help you I ask as a elderly lady struggle with the touch screen. Oh thank you dear” it feels good to have such simple conversations with strangers. Is this what the world is like, is this normal?
Am I starving to be apart of this world that does not include puke bowls and weigh ins and medical talk? Do I look normal? Do they look at me and see a sick kid mom? Broken and shattered. This feeling of normal is scary. I feel guilt. I need to hold on or I will blow away like a balloon getting lost up in the sky.
Yesterday I had a good friend invited me to Toronto for the weekend. At first all these thoughts ran through my head, I should not go, what would I do otherwise? Every 11 days I get a small piece of time. If I have learnt anything from this experience life is short and unpredictable…. why not? It is a crazy feeling to want to experience so much all at one time. With the boys, for myself. Everything feels like snippet of time that I have to grip, memorizing the details, the colours the smells the sounds. Is this a normal feeling? I don’t know what the weekend will hold but right now I am enjoying every second and I have not even got off the train yet! Adventure awaits…

 

Merry-Go-Round

by

Air raid from every angle, battlefield on all sides
It seems attacks are on, everything that my heart finds.
A heart once full of sunshine, rainbows and innocence
Now holds together with duck tape, glue and a sad stitch.
My heart still beats with little cracks, pieces chipped and shattered
This merry-go-round of insanity, it just keeps going round and round
How many more stones must I carry, before I am totally drowned
I dream of a utopia, even a mirage in the desert will do
a drink of water please to cure the incurable thirst.
I wish I knew the destination, I wish I knew the master plan
I tell myself to take a breath, and try to place no blame
Do not look back, do not regret, this is the challenge here
I learn one more step, thats all that I need, then one more to build some strength
To carry on when all seems lost, and live each day with hope and grace

In the News

by

This week has been trying in the news and has impacted me more then I can really explain. How can I feel such emotions for people I have never met? The news of Johnathan Pitre left me in sobbing tears as I pictured his mother by his hospital bed everyday and the familiarity just hit me way to hard; the loss after such a long hard fight, the fatigue of war.

Everyday the toll from #Broncos crash climbs and my heart bleeds for those family’s. The shock, no warning or time to prepare.

On social media I have been following a little girl, Holly, who after 3 years battling brain cancer stopped treatment and made it her mission to spread the message #happinessiseverywhere . I messaged her mother today thanking her for sharing her story and how much it has helped me.

I have replayed these situations in my head so many times with a million questions floating around. I think of all these stories and at first heartbreak and devastation poured out through tears but the more I thought about it the more it made me realize that these children and families have really left this world with a beautiful message. Their stories have been shared and have created a movement and not one of sadness but one on how precious this life is. A movement about helping others, having empathy, seeing happiness in the small things. This world and all these situations are hard to understand. The pain in this life is unbearable at times. I myself have gone through stages of bitterness and anger but I have also felt such love and seen amazing beauty. It has taught me that every day is truly a gift. Take every moment in like a deep inhale of air. Try to just be a good person with a pure heart. There is no crystal ball, no road map of what will happen next and sometimes you can plan and prepare all you want or sometimes a slap shot takes you by surprise but you have two choices: You can let the bad times over take you or you can rise up and let it make you a stronger person. I can guarantee you the more you focus on the positives the more you will see there is more sunshine then darkness in this world.

Time

by

Growing up I felt like I had all the time in the world. I was carefree and invincible. I believed in infinite possibilities. My friends and I would make up dances on the beach, we would climb tress and make forts. We jumped out of barns onto piles of hay or snow boarded down the roofs into piles of snow. We had mud fights in cow plop fields. We dreamed big and played hard. Time passed a bit more and my friends and I would stay up all night playing poker and listening to Steve Miller band. I remember my first dance and going on my first date all awkward and nervous. Summers were filled with serving jobs and boating on the big Rideau. I went off to University for visual arts, against the better judgement of my parents, because as a teenager you think they know nothing. After a year I did not see a career in painting and drawing nude people but once again I had all this Time in the world. Now I look back onto my childhood and teenage years and I see how precious all these moments were and how lucky I was to be able to grow up so free and healthy.

Everyday I look at Aiden and see all that he is missing out on and it is not fair and it is not right. I feel so powerless to give him all these memories and a chance to grow up so free. He should be running around catching frogs, He should be having slumber parties with friends and someday fall in love and kiss his first girl. and I think of all these things, all this time that has already been taking away from us and is being taken away from us. I look over our voyage so far and we have been able to do so many amazing things, Our trip to Disney, meeting the Ottawa Senators, taking Aiden to his first concert, and as precious as these memories are they too are getting harder. I don’t want to cram a lifetime into a unknown timeframe and windows of good days. I would trade all of these amazing experiences for just more time but it something you can not buy or beg for.

I am trying to process this situation and look for the positives and meaning in all this but everyday it just gets harder and harder. The one thing that does help is seeing how many people truly care and love us. I see my community and friends come together in fundraising and reaching out to support us any way they can and I am so truly grateful. Like they say “no one fight alone” and I truly feel we have an army of support. I have had a lot of people ask how Aiden is doing and for an update from His last MRI but it is getting harder and harder to answer as the reality of this awful disease set in. We have fought this once but unfortunate the winning was short-lived and the cancer is still growing. From the last MRI the doctors are unable to tell us if the chemotherapy is even slowing down the growth. You think you have all this time in this world until you find out you don’t.

We are trying to just live each day as normal as possible but this is anything but normal. We keep pushing on, keep fighting. Aiden has been going to school and I usually pick him up in the afternoon although as the fatigue kicks in harder I don’t know how long he will stay in school for. We are working out a better schedule to give him a couple hours to get away from the house and me and be around other kids. Generally Aiden is happy and jokes around, plays with his brothers and nightly cuddles with mom. Besides the standard effects of the chemotherapy, tired, no appetite and hair loss there is no other symptoms of growth from the outside looking in. The weekly trips for blood draws are getting harder and harder as Aiden is tired of being poked and proded and rightfully so.
We have Aiden on canabis oil and I have started taking him to reiki, I have spent endless hours on google looking for other trials, I have called the doctor we had in Boston trying to reach out for any other suggestions, I have asked about more radiation, stem cell, more chemo But unfortunately Cancer is a horrible sneaking, cruel and unforgiving time stealing monster. We will be adding another chemotherapy as Aiden starts another round next week with the hope that this may slow or stop the growth and we have another MRI booked for May. I can’t believe one of the number one childhood cancers out there, medulloblastoma, and the doctors can not offer us much of anything. I am angry and heartbroken and a mix of so much more I can not explain. The debate of quality of life vs time is continually on our mind as we just take it one day at a time. Thank you everyone for all your support and love and keep up your prayers.