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The Next Leg of Voyage

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3 months since Aiden’s passing, I feel the clock tick but the speed is unknown to me. I realize time is an illusion of our minds. Am I going too fast? Am I not going fast enough? Where is the rule book on losing a child and healing? The last 2 weeks I feel like I am entering into a new stage of grief and healing. I have finally been able to look at photos of Aiden and although I tear up, I am able to allow myself to accept these feelings. I am able to talk more freely about him and accept when others share their memories as well. This may seem like a small feat but the alternative was running from them or denying them or doing a shot of vodka to get through them.I feel like a door has been opened and when I close my eyes I can see through this open door way and there is something beautiful, shining, on the other side. An open space with possibilities and roads to different futures.

I have also started to be able to leave “Aiden” (well his urn) in one spot. Up until now I have carried Aiden back and forth with me to our trailer in Delta and our home in Almonte, but as I lay in bed in Almonte typing this I know Aiden is safe and at peace in heaven even with his urn sitting on my nightstand in Delta.

Last month our family set out on many adventures. We spent so much time outside, hiking to beautiful peaks and jumping off cliffs into deep cool waters. Chasing fireflies, telling stories around campfires, paddle board adventures, dancing in the rain and so much more. I have been able to share with my kids, my childhood adventures. There is such amazing beauty and freedom that comes from growing up as a country kid. I always tell the kids to “Be Wild & Free” and that is exactly what we have been doing! I think another part of the healing has come from appreciating this and being able to give this to my children now.

Having a child with Cancer or a complex care child takes a lot of freedoms we take for granted away. I feel no hardship or bitterness towards my life as a complex care mom, it taught me so much. Aiden was truly a warrior who fought harder then any for so long but I am not going to sugar coat it and say it was not difficult and stopped us from doing many things, especially outdoor play. I remember before Aiden got sick he would spend hours on the beach making sand castles and swimming and catching frogs – he loved to swim underwater. Once he got sick it was too hot for him to stay outside long. The posteria fossa he developed from his first surgery to try and remove the cancer took his balance away making walking, especially on uneven ground, very difficult or needing a wheelchair for long distances. Cancer took so many of these little joys away from him but that is not to say we did not make up for it in other ways. We spent more time doing quiet activities, chatting or snuggling watching movies. We still went on adventures to museums or Aiden’s favourite activity of science experiments and making YouTube videos. We adapted, and I would not change it because it also showed me that life goes on even through hardship. It showed me that it is human nature to learn to adapt and survive.

I look back over the last 4 years and see we just transitioned into a new normal. The routine of Aiden waking and puking in the sink every morning or night routine of organizing 10 different medications and hooking up feeding pump was our normal. Yes, there was many of times Aiden cried out in frustrations and sadness for the freedoms he remembered feeling pre-cancer but overall we were not unhappy. Aiden was a very happy kid and if I compare his outburst to those of our 5 children now they are all quite consistent in frequency of frustrations. Everyone breaks downs at times. Everyone gets angry, sad, frustrated and as I see now I really don’t feel Aiden did more so then any other kids at his age. This realization has also given me a huge sense of peace! It is funny when you are stuck in a moment nothing else seems to compare but when you take a step back you can see a larger picture and realize it may not have been as you perceive in that moment and a clarity can come from that.

I think one of the biggest things that I have felt over the last three months is this new relationship develop with the other kids, but specifically Lynkon. I feel like I am just learning who he is and getting to really experience his personality. I was still breast feeding Lynkon when Aiden got sick. I missed out on a lot of time in his development. Lynkon and Declan stayed with Family for the first couple months when Aiden was in hospital and then Aiden and I left for essential a year to Boston and Toronto for treatment. Children develop so fast, learning to walk and talk and just really experience the world for the first time. I remember the first time Aiden realized he had ears! The smile on his face as he rubbed his cubby baby hands on the sides of his face will be forever engraved in my mind. Declan was only 4 when Aiden got sick. the same age Lynkon is now! Declan remembers the Aiden that would chase him around and share a bunk bed and play cars with him till the wee hours in bed, but he also remembers losing this brother and having to learn at such a young age how to adapt and accept a new normal. He also learned how to have patience and compassion and empathy at the same time. Over the last couple months I have seen a huge change is Declan as well. I have seen a confidence grow in him. I have seen security grow in him as we settle into this new normal. A normal with more consistency and security of future and this is something I am so grateful for. Would we have lived the unstable life of childhood cancer for another 20 + years and survived without bitterness or regrets and still full of love, YES! but is this new normal of consistency and security nice? YES! I know we still have along road in healing, for all of us, but I know there is a bright road ahead and I know that is what Aiden would want and wants for us as we watches over us. Aiden being sick has brought me to this stage in my life where I am truly happy with who I am as a person. He has given me a love for myself that I never really knew or accepted.

So as I try and figure out this next leg in our voyage I contemplate many possibilities. I have begun to ask many questions on my future. I try to figure out situation with work, I had just been promoted to General Manager of Agricultural Society, my future career I though for the next 26 years but Aiden got sick and then had to take a leave putting this dream on hold. What does that career path look like now? I have been contemplating going back to school to be a registered therapist, to give back and help others going through similar situations although gaining a masters at 36 (2.5 years of school) seems like a huge feat with crippling anxiety at times. I have started to think more about writing professionally, with a book of 56,000 words already written I feel like this is a calling that I need to complete but not mentally ready yet. It would mean reliving all the experiences of the last 4 years where I just became able to look at photos. I have most recently signed up to be an artist with Maskcara Beauty, a business I can do from home yet still get to be creative with social media and online technologies and makeup all of which I find joy and love in. One of the most present thoughts over the last couple weeks have been on what I want my blog “MamaOutpost: Aiden’s Voyage” to be. Has it become just “MamaOutpost” at this point? Can it? Am I dishonouring Aiden by changing the name and what will my message be? or am I more dishonouring him by abandoning it? How else can I honour my amazing boy? A million questions race through my mind with no answers, but I know that is ok. I feel like putting them out there is the first step in change and growth. Like jumping off a cliff into beautiful water, it can be REALLY scary but all it takes is that one step and you are flying.

I think most importantly at this stage I am able to focus on my kids and be something I truly love and that is a mother. I think if Aiden has taught me anything is that life is always challenging you and changing but most importantly the ability to grow from these challenges and accept and embrace these changes is something that can lead you to a life that is truly beautiful.

What is normal anyways as long as there are smiles?

Thank you everyone for all your support and love on this voyage and wherever it may take me.

Always in My Heart

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Friday May 1st we said our final goodbyes to Aiden in a private funeral service and honoured Aiden with family bbq, balloons to heaven and birthday cake. I would like to share the beautiful eulogy written by Aiden’s Aunt Christine below as I really could not have written it any better…..

Aiden was a son, a brother, a cousin, a grandson, a nephew, a friend and a warrior.  I think that watching someone battle cancer; especially a child makes us all realize that life is so incredibly short.  We need to appreciate the little things in life, the beautiful sunrises & sunsets, our friends and family & most importantly our health.

Aiden fought one of the hardest battles any person has to fight, cancer!  He had to learn to walk and talk and eat again after brain surgery in September 2016.  It’s been a long road, many hospitals, from Almonte to Ottawa, to Boston to Toronto and finally being offered a chance to go to Memphis Tennessee.  Although all of these medical interventions didn’t cure Aidens cancer, we were given 3 ½ more years to spend with him.

When Aiden was given months to live before Christmas in December 2018, paperwork was completed promptly with the Make a Wish Foundation to send the family on a magical Disney vacation to DisneyLand California. It was an incredible experience that has provided a lifetime of wonderful memories.

Although Aiden will not get to experience many of life’s wonderful experiences that come with growing old, we can look back on his journey with a smile on our faces remembering the many amazing things he did get to see and do in his almost 11 years of life.  

– He got to see and feel unconditional love from so many amazing people – family, friends, & teachers

– Aiden was a wonderful big brother to Declan & Lynkon, they loved to play video games together, camp, fish, boat and wrestle with one another the way brothers do.

– He had airplane rides, train rides, helicopter rides, and far too many car rides for his liking. 

– He got to live big city life (often having views from the upper floors)

– He watched  all the latest movies, played Pokemon and dragon legends to his heart’s delight, while sipping peach juice and eating white chocolate

– He made many wonderful friends along the way

– He got to have pets, including 2 dogs, a cat, a turtle, 2 chickens, and fish!

– He gained an amazing step dad Jay and 3 beautiful and caring step sisters, Delilah, Rowen and Lilith

Last summer Jay & Steph rented a motorhome and went on an adventure with all 6 kids. They were able to spend time at Santa’s village and camped which was very magical for all of them.

Aiden loved being outdoors, catching frogs, fishing, playing tag, watching movies and playing video games.  Being the aunt with 2 girls he had a lot of explaining to do when it came to getting me to understand what the heck he was playing most of the time.

Aiden taught us all so much; we need to live each day as though it’s our last, we probably all need to relax just a bit, we don’t need to fear death, and the corona virus is not the worst thing in the world….in Aidens words “just to deal with it!”

Caring for Aiden for the past 4 years has been a full time job.  Many days he was not able to go to school or only be there for a short amount of time.  Never once complaining about having to give up so much, Stephanie always put on a brave face, and a smile to hide the pain and made each day the best it could be.  Steph often said she wanted to do something special for Aiden when she knew he had little time left. All she had to do was mention this to Aidens teacher and the plans started forming for a huge parade to honour Aiden.  It was a day none of us will ever forget!

On May 1st, 2009 Aiden made Jeff and I an aunt and uncle, and boy were we excited to meet the adorable little baby (actually big baby!)  with a full head of hair.  Hollie and Olivia were blessed to be able to experience the friendship and companionship of having Aiden as their cousin.  Aiden was Olivia’s first friend and cousin growing up together.  He will be so missed. 

Heaven has gained a beautiful new angel who will be waiting for us all when we arrive.  We need to remember that Aiden was excited to get to heaven and see what it’s like, he’ll be showing us all the ins and outs when we arrive.

We will all need to stick together and adjust to the new normal as we mourn Aiden, but remember that he would want us to be happy and enjoy each day.  

I’ll leave us with This quote from Richard Puz

“Death leaves a heartache no one can heal, love leaves a memory no one can steal.”

Christine Fotherby

Saying Goodbye

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How do I say goodbye to my beautiful wolverine baby that I grew in my body for 9 months? Who I rocked to sleep suckling at my breast for 12 months? Held his tiny fingers as I taught him how to stand, to walk to eventually run. Who I comforted in times of sadness and shared in joys of accomplishments. Who I tucked in every-night with a kiss and bad singing of a You Are My Sunshine. Who I fought for 4 years side by side to find a cure and give the best possible memories and quality of life too? I don’t think I ever can….

Aiden taught me so much in his short 11 years. He was always the first to speak his mind. He had such an intelligent dry humour. I remember in Kindergarten Parent Teacher the teacher said Aiden was very intelligent and strong willed quoting “If Aiden was a 30 year old executive he would be top of his company, unfortunately those skills are not sought after in Kindergarten.” Aiden loved hearing this story! He loved white chocolate chips and peach juice like no other. He loved his iPad, all kids of music, making up experiments and YouTube videos. Most of all he loved his Dad, his brothers, step-sisters, Jay, cousins, Aunts and uncles, grandparents and just such a love for his family and friends.

Last night, Saturday April 25th, 2020 at 11:45 am Aiden took his last breath wrapped in my loving arms at home and surrounded by his Father Josh, Step-Father Jay and an amazingly loving nurse.

The previous week Aiden had been essentially unresponsive. His heart rate had increased to 170-180 and breathing pattern had changed significantly. We knew it would not be long but as we were told also no one knows the exact timing. Rogers House has been amazing setting us up with night nursing at home to help us through the difficult nights of very little sleep and keeping Aiden comfortable. On Friday, Aiden woke up and opened his eyes! It was shocking and amazing! He was able to point and say a couple words through whisper. One word was “Scared” My heart broke and I could only imagine how he must feel awake from essentially a 3 day coma unable to walk or really talk once again and feeling his body shutting down. I comforted him with honest words that his Cancer was growing making it hard to move and that he would fall asleep and wake up a beautiful angel soon enough and finally be free. He pointed to the bathroom and I was able to sit with him in the bath. He watched Onward with his Dad and brothers in my bed for the afternoon and then joined Jay, my Dad and me downstairs on the couch in the evening as he had some peach juice and white chipits. It was such an amazing gift to see his beautiful brown eyes open and alert for just one more day.

Friday night I fell asleep to Aiden watching How to Train your Dragon nuzzled next to me in bed. The night nurse monitored him closely as his heart rate had now increased to 200 and OT saturation lowering to 89. Around 8:30 am I woke Saturday morning nuzzled to Aiden and I could once again tell his breath pattern had changed. Three deep breaths and 10 second pause on repeat. I tried to wake Aiden but he was deep in coma like state. There was no more moving his arms as his body lay continually lifeless. I held him close listening to every breath afraid to even leave to go to the washroom. I messaged Josh to tell him to come over early with the boys and just nuzzled Aiden safe into my body falling in and out of sleep to the sound of uncertain breaths. My brother had stopped in and I could hear voices downstairs I cried for someone to come upstairs, by this point I could not hold it and I had to untangle my body from Aidens to go to the washroom. “I don’t want him to be alone” and tears poured from my eyes. I am so thankful for having such an amazing supportive family. My brother sat with Aiden and I quickly peed and got back into bed, Aiden once again safely nuzzled into my body and wrapped tight in my arms. Aiden still so unresponsive to anything around him and his breath once again changing this time to consist of short fast breaths. Josh arrived at 10 and we called Rogers House together. They Zoom videod and I set the camera to Aidens chest so they could watched his breathing pattern. Our worst fears were confirmed as we were told “this will be a very long day, to make sure we still eat and drink” and they recommend at this point Josh stay at my house to be by Aiden side as his time was drawing near.

The afternoon was spent with Aiden alternating between our loving arms and whispering words of comfort and security. Words of allowing him to be free that he did not have to fight any longer, that Mom and Dad are ok. We had a quick nursing visit again at noon to ensure we had any medication we may need already drew up to keep Aiden comfortable. Again Aidens breath changed to the long pauses.

I am so incredibly thankful for all the people who sent music requests in! Music was one of Aidens favourite things and we were told that he was still able to hear. The afternoon was spent with “Alexa please play…” we filled the room with music for the rest of the afternoon sent to us from all his loving followers on MamaOutpost. It took my mind from listening to every breath and just changed the whole air in the room to help us through this last part of the voyage. I am going to make Aidens ultimate playlist with all the songs that had been sent to us. This gives me such a peace that I am incredibly grateful for and as I type this tears form in my eyes.

At 5:30 pm Aidens breath once again changed to almost non existence. I asked Jay to call Rogers House as I knew it would take some time for them to get to our home and I thought for sure this was now the end. I will give my boy credit he has more fight in him then anyone I will ever meet. My family ordered Chinese from the famous Canadian Cafe in Almonte and Josh’s parents and my family all held strong together filling our house with such a love for Aiden and such a support system. The doctor arrived around 7 pm and Aiden was still gripping to every last breath, heart beat at 220. We joked that Aiden never wanted to miss out on anything and told that it could happen as the doctor was on the way back to Cheo but could also be by the morning. This unknown timeframe, so many unknowns cause my whole body to shiver. We were told that his breaths would go from the pauses to short breaths and his heart rate would begin to fall at which point we would know the time was closer. Finally we said goodbye to our family, Declan and Lynkon went with Joshes parents to his house and Jay, Josh and I bunkered down with Aiden in my room. Aidens breathing again changed and he sounded in distress with a gurgle in his throat. Josh administered Aidens medication to help him breath as I held him in my arms like a new born baby, trying to keep him upright to help with the secreations in his throat and clear his airways. the fear filled my pours, I felt helpless in all I knew what to do was hold my baby in my arms and whisper I love you. The night nurse called at 10 pm and the flood gates opened as she asked if I wanted her to come early. Crackle in my voice “yes please”. We tried our best to keep Aiden comfortable through gurgled and spastic breaths. Josh administer morphine and Medazaline to try to help with the breathing and lower his heart rate as it looked so difficult as Aiden chest punched forward working so hard for something so-many take for granted. We had been told that Aiden is quite comfortable and unaware of what is going on that this is just extreme difficult for us standing by.

Finally the nurse came, we had had her the previous weekend and she just encompassed the love of a mother. Jay had even joked before Aiden had turned that if he or Josh were not there she would have most likely cuddled right up beside me in bed and held me and Aiden in her arms to walk us through this, something I would not have had an issue with either. She immediately brought a calm to the room as she helped me situate Aiden, comfortably in pillows and administered more medication to bring Aidens heart rate down. I could finally breath as I looked at my sweet sweet boy who just looked so comfortable once again. His breathing settled and exhaustion overtook my body. I cuddled beside Aiden, my head nuzzled against his. Jay held me in his arms behind me and Josh lay at the end of the bed rubbing Aiden’s legs. It was around 11:30 at that point and sleep overtook me next to Aiden. It felt like I had fell into a deep sleep but woke to Aiden coughing, sounding like he was choking. I rolled him to his side as I heard the nurse say “This is it”. His sweet face eye to eye with mine and one more cough and his face changed, his lips parted and checks relaxed. I could feel the warmth of his body but I knew that that was his last breath and I could not help but smile as I saw the peace grace over his beautiful face. I heard Joshs mornful cry as he fell onto Aiden trying to grab every last moment with his son and my heart broke for him as I could see he was not ready.

I stared at Aiden’s angelic face, I was not scared which had been my fear as I had never seen death before. He was just beautiful. The sound of the room was quite, there was no more struggling to breath. Silence echoed in the air and left me unsure what to feel as I tried to grab onto the concept of this silence. He was just beautiful as I traced every feature into my mind. My boy really did have the most beautiful eyelashes. Josh mourned over Aiden and we called his father to come to comfort him. I looked to Jay as tears brimmed his eyes and I did just feel at peace. A sad, sad peace. I was so incredibly grateful to have this amazing partner in my life, a man who has slept on the floor bedside to Aiden and I for the last 5 weeks. Always there. Joshes Dad arrived as I just continued to memorize every millimiter of Aidens face. Josh stepped out with his father and the nurse asked if I wanted Aidens changed to different clothes. YES! it may seem silly but this was a thought that had entered my mind over and over the last couple days. I did not want him to be cold when they took him away. I asked Jay to get Aiden blue soft hoodie, I wanted him to be warm. I could not find the shirt I had glued in my mind as panic had set in as I riffled through the laundry. Finally the nurse told me its ok, to take my time, we will find it and she helped look. The pile I had already looked into seemed to open up as I took my breath and found the burgandy-peach coloured “WiFi No Panic t-shirt” for Aiden. I left the room as the nurse dressed Aiden and returned to him laying peaceful in his best dressed for school, dressed for everyday. comfortable, warm, soft and safe. I could not ask for anything more. I cuddled beside him his body still warm which surprised me. The doctor had just arrived and I watch as she put her stethispoce to his chest. no breath although I swear I still saw movement. The nurse and doctor talked and I don’t remember her leaving or much about her. I once again cuddled next to Aidens still warm body, my hand on his chest and Josh lay to the other side. The door was closed and I fell asleep for the last time with Aidens body next to mine. Time passed and we heard a knock, the time was here. I knew Aiden had to go but I was not ready. I did not want him cold and alone. I knew he would just be down the street at the home that Declans friend also lived at and this gave me comfort but this still stung as the reality settled in. A young man in full dress uniform entered. It was now around 3am yet here was a young man fully dressing in grey suit and long dress coat asking if we had questions. I asked how they would take him if they had a stretcher, I confirmed he would just be down the street, I confirmed they would keep his safe Minecraft blanket with him and his three stuffies so he would not be scared. All to which I was assured. I kissed his now cooling face and told him I loved him and I stepped out of the room, not wanted to see them move him from the comfort of my bed that had been his home consistently for the last 6 weeks. And that was it. I sat in the garage with my dad and Jay and I heard the noise of Aiden coming down the stairs. The nurse popped her head in to ask if I wanted to see him be put in the vehicle, “sometime people find peace in it” no I was ok. and then that was it. Josh came downstairs and said goodby with plans to bring to boys over in the morning to talk to the and let them know their big brother passed away. As Jay and I returned inside, my dad Called, “it may be hard going back to your room!” Thanks Dad. Jay and I went back upstairs. Our amazing nurse was still there, she had changed the sheets and pillows and comforted us. I asked her if this was the only care she did, end of life. Yes. I asked her how many?, the look in her eyes told me so many. Then I ask how many kids? Aiden was her first! I was in disbelief. I told her I could not believe this in how natural she had been with Aiden. She told me she never had biological kids of her own so she never felt she could properly care for children. I told her she was so mothering and loving right from the start she was just so comfortable with Aiden the weekend before. It was so incredibly beautiful and I felt almost surreal that of all the years AIDEN was her first child she walked through death. (If your reading this I am so thankful for you during this time.)

And then the time came for everyone to leave and it was just Jay in I, looking at a bed that had not been our own since Aiden’s seizure in June. How do we look at this bed and not hear the witty comments from Aiden or think about the struggles of the last 6 weeks. But as I nuzzled into the warmth of Jays body I felt safe. We put on a show but within minutes both fell asleep.

I know the next couple days will be… well I really don’t even know. Josh came this morning with our boys and we told them Aiden is now free and they seemed ok. After some controversy this morning we will see our girls tomorrow and we will just go from there. I know we will get though this and I know we have so much love and support around us. And I know Aiden is free and at peace and all we can do now is just live and learn what this new life will look like.

Thank you to everyone for all the words of support and condolence, I will not be able to answer to all but I will read them. If you are able to help financially a go fund has been set up to offset costs I have incurred, funeral arrangements and really just help give us the time we need to mourn. Thank you and lots of love.

Our last Month….

Update with Sincere Love & Heartbreak

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We arrived home from Memphis 1 month ago today. I never imagined Aiden would still be with us. I never imagined we would celebrate his 11th birthday, I never imagined the Easter Bunny would visit Aiden one more time. For all these times I am so incredibly grateful.

We celebrated an early birthday April 1st. I was worried Aiden would be to tired or truthfully, not here for May 1st. Somehow word got out of this early birthday and I feel like half the Almonte/Ottawa area came out to help make it an extra special day with a car parade, posters and cards dropped to our door step and so much more! One last adventure! It was a very emotional day but we just felt so much love. What more can we really ask for other then knowing we are surrounded by great family, friends , and community! If you have not seen the video from CTV yet it is pretty amazing seeing how many vehicles showed up. https://ottawa.ctvnews.ca/impromptu-birthday-parade-for-almonte-boy-with-cancer-1.4878239

Easter weekend was so very different, yet one which will be remembered and cherished forever. Aiden woke Sunday morning to a beautiful Easter Bunny basket filled with white chocolate and sweet gummies from one of our families favourite shops, Baker Bobs. Aiden sat up eating sandwiches and chocolate and enjoying peach juice. Aiden’s Dad came for his daily visits and boys compared Easter treats. Jay and I had a quite dinner in bed with Aiden and we spent the early evening cuddling and chatting and watching movies. It was nice and peaceful if not a little sad that we would not be celebrating with our extended family or even our other kids for that matter as it was “not our weekend” but at the same time I feel God may have known we needed this quite peace.

As many of you know, sadly the trial was too hard for Aiden’s body. The disease had already progressed so much and we knew the trial was a long shot when we left. I can say with all my heart that it was not for lack of trying. I can say with all my heart that Aiden has fought harder then any child ever should. I can say with all my heart I have tried to always find Aiden the best possible treatments and best quality of life, unfortunately Cancer is a very horrible disease. I wish I had more energy and time and mental capacity to write all the events and all the details that have led us here today, maybe someday I will. For now I can write Aiden is sleeping very comfortable beside me in my bed with his family around him. The last month has been filled with a lot of heartache but also so much love.

Last night around 9 pm as we lay cuddled in bed, Aiden tried to comment on Ruth from Ozark but his words came out in a string of nonsense, very similar to when we went to the ICU in Memphis. Aiden was not distressed, in fact he was in a delirium state of joy as his eyes tick tocked like a pendulum of a clock. I called Rogers House worried, ‘What should I do?!” to which I was told, “Nothing, just be there to love and keep him feeling safe and comfortable. I have total faith in you.” I was told to give Aiden melatonin, that his brain needed to rest. I thought strange as I have a closet full of narcotics to “keep Aiden comfortable” but really have used very little over the last weeks beside Tylonol. The melatonin helped and Aiden fell asleep until about 1:30am. His arms became restless and his delirium was still there. I gave him a sedative to help calm him. Communication is a remarkable thing, although Aiden could not verbally communicate, in his eyes I could see he was there and he was not scared. In his drossy state he wrapped his arms around me and nuzzled into my body. Almost drunkenly and compulsively in the night he would kiss me. His chubby round cheeks would push against my face. I could not tell if he was really awake or asleep but I softly whispered “I love you” each time and wrapped him closer into my arms and we both fell into broken sleep through the rest of the night. Morning came and I called Rogers House again to request a doctor come out and examine Aiden in person. We have been doing zoom meeting but I needed an actual person. I am asked a couple screening questions regarding the virus which of we course pass and am told the doctor will be out around 11. Rogers House has been truly amazing through this.

Aiden’s Dad came around 10 this morning with the other two boy and we all sat on my bed together watching Toy Story. Aiden’s favourite movie when he was 4-5. He had a Woody doll he took everywhere, I remember him loosing it once and we had to go out and get him a new one to go to sleep with. Aiden lay between Josh and I soundly asleep. I remember thinking “I never thought Josh and I would ever be in the same bed again. Aiden looked so peaceful and comfortable and was holding each of our hands. Fingers wrapped around and I remembered him as a baby, all tiny fingers wrapped around my index finger.

Around 11 the Rogers House doctor arrived. The doctor looked at Aiden on my bed, sleeping so peacefull. “He is very comfortable, probably the most comfortable in the house.” Not surprisingly the conclusion was that again this was tumour progression. Aiden was still pretty unresponsive. His breathing unsteady as he takes a couple deep fast deep breaths then slow to the questioning of existence but then again a deep breath and repeat. The doctor told us this was all common in this stage although I don’t know if that helped in my fears and grief or not? I was warned that this breathing will get more lengthy in breaks as progression continues and although it is not painful for Aiden it is extremely painful for us to watch. I nodded quietly as tears trickled down my cheeks. We were told that the last sense to go is hearing so to just continue to give him loving words. The second last sense to go is touch, so just take his lead and hold him and keep him comfy with even just a sheet as it is light on his skin. A couple more words of encouragement and questions answered and the doctor left.

Jay and the girls had gotten home by then and I gave Josh some time alone with Aiden. I went downstairs to get a makeover from Rowan, complete with pink eye shadow and hot pink nails. This is where I know I will make it through because as much as I just want to lay down beside Aiden and enter into a blissful sleep with him I also have this energy inside me that although at that moment getting makeup done was the last thing I wanted I pushed myself through it. I feel like I am pushing myself through more each day as it becomes harder each day. Josh leaves just after 12 and it is just us in the house. We talk to the kids about Aidens progression and try to prepare as best we can. Declan is devastated, and angry at the world which reflects onto the ones he loves the most. All the kids play amazing together but Declan takes all his worry and sadness for Aiden and the smallest thing sets him off into tears throughout the day. I hold him and comfort him and tell him how much he is loved. He wants to have a 24 hour fort challenge with only me. My heart breaks as I tell him I need to be with Aiden right now but that does not mean I don’t want to spend time with him any less. It is honestly exhausting but I think we do ok managing the emotions of five children 10 and under. It feels strange and unsettling to say 5 children instead of 6 but at this point Aidens care has moved beyond parenting.

Josh leaves with his phone handy if anything changes and we all steal spots in my room to relax and watch a show all together. Aiden sleeps peacefully, opening his eyes every now and again. I think one of my biggest fears when considering staying at home or going to Rogers House was the other kids and how this would affect them. I did not want to scare them. I did not know what to expect myself. But as we all sit cuddled on the bed or chair or floor of even under the bed at times surrounding Aiden I feel the fear replaced by peace. The peace in knowing that Aiden is loved and that our kids are loved and supported by Jay and myself and our families.

The afternoon passes. Aiden stays peacefully sleeping with little eye flutters and moments of awareness throughout the day. A couple words whispered through his dry lips to help us help him. Josh returns at 3 and Jay and I take the kids outside to play in the rain. I need to get out of the house. I need to show the kids fun. I need to show them how beautiful this world is. Maybe I also need these things for myself. Declan stays with Aiden and Josh and the rest of us head outside with paper boats that do not work in the puddles but the kids have fun trying anyways. We find a mommy and daddy and baby worm that the spring rain had brought out and bring them home for pets. As we walked the clouds and the wind blew and I could feel this freshness of air sweeping in and wrapping around me. We are soaked and dirty but we are happy.

Just before dinner the door bell rings, I had talked to my brother in the morning on the phone to give him a heads up with Aiden’s decline. Christine, Jeff and my nieces come to say goodbyes to Aiden. I joke and say, knowing Aidens it could be weeks yet trying to steal the tears from my nieces cheeks. We all sit together with Aiden. Delilah has perched herself under my arm “In her spot”. Aiden peacefully sleeping on the other side of me. I tell Olivia how I remember being pregnant with Aiden and her mom being pregnant with her at the same time, they are only 3 months apart. We talk about Aiden not being in any more pain anymore and how lucky we are that we have all the opportunities to live beautiful full lives and one day we will see Aiden again. I try to give security and tell them a conversation I had with Aiden the other week while we was in one of his 2 hour long baths. Aiden said he was excited to see what heaven is like and he felt ok that this was his time to go. I had said I would see him in heaven again and he said “Hopefully not soon” I laughed saying “why you sick of me and don’t want to see me?” to which he replied ” No, I just don’t want you to pass anytime soon” Oh my sweet boy! The girls gave Aiden hugs and we said goodbyes.

Jay get dinner ready for the kids and I stay with Aiden. I play Ocean on repeat and watch Aiden breath. I listen to the energy coming from downstairs and smile. Jay brings me a beer as an appetizer and asks if I want food brought up. I feel so incredibly loved and safe. We finish dinner and watch one of my all time favourite movies, Pleasantville. I forgot when choosing but really was quite fitting for the day. It is just about living and feeling and appreciating all the beauty in the world. Jay snores in the corner chair and the other kids laughed at the movie and then tried to bargain a second show out of me. I think they could see my exhaustion and did not push too hard. Aiden sleeps comfortably beside me through it all. It really is a pretty nice night and day despite it all. I lay here now recalling the day and Aiden snoring softly beside me, I feel a peace wash over me. I think the hardest part in this is not knowing the timing and just watching Aiden slowly declining and being powerless to stop it. Last week before the girls left I had a feeling it would be the last time Aiden was able to communicate, this week I feel like maybe days still but this is an impossible game to guess and it hurts more to even try. I am incredibly sad, I am incredibly exhausted, I am a little scared and there is a indescribable pain in my body that resonates all over but I also feel a peace for Aiden and for all of us that we will get through this and that is what I am trying to lean on right now.

Thank you to all who have followed us on this voyage. Thank you for all the messages and words of encouragement. I do read them all and share with Aiden when fitting. Thank you everyone who has helped us and offered support since we have come come home. Thank you to all who have been a lighthouse in this stormy sea.

Compassion vs Controll

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One of the most difficult things while we were away was being separated from Jay and his Girls. Many FaceTime calls were filled with tear on how much we missed each other. We had plans for the girls and Jay to drive down for the March Break thinking we would still be in Memphis for another month if the trial was working. Unfortunately the trial was not working and we are home now, although even if that still was the plan Jay was unable to get Travel convent forms signed from the other party. March break time was something that was worked out months ago in exchange for time that was received for the girls to go on a trip with their mother to Flordia in February.

Now we are finally safe and sound at home and excited once again for our blended family to be together, thinking that the timing was actually perfect on coming home as this was already our scheduled week and Aiden is feeling quite well with the steroid working. Unfortunately, such as my life nothing is easy and now we are hearing excuses the girls can not visit because we have been exposed to the corona virus. As soon as I heard this was the reasoning I reached out to Aiden’s Doctor and got a note:

“At my visit earlier today we discussed visitors to your home while you are in isolation. You are to minimize visitors, but under current guidance, it is understood that families with end of life situations that family members and loved ones are permitted to visit. We also discussed the importance to above all maintain good hand washing with lots of soap. We are both aware, that the current incidence of COVID19 in Tennessee is very similar to Ontario and that both you and Aiden have not been in contact with anyone known to have COVID19 and neither you nor Aiden have any signs or symptoms that are associated with COVID19. “ from the Roger Neilson House Doctor

Unfortunately, I guess the word of a doctor means nothing and now the request is that this letter needs to be sent to lawyer and also the girls family doctor which could be days. In talking to the doctor over the phone I was also told that children are not even at risk for the disease and by the time they were returned after the March Break they would be out of the gestation period so no risk of bringing the virus back to mothers home. I just wonder when this consistent acts of saying jump and we say how high will stop?

Declan has asked during our stay and since we left Memphis when he was going to see Rowan again. Having all kinds of plans organized for the two this week, Fort building, slumber party, sledding, food challenge, trying to make up for lost time. I had mentioned to Declan last night that sadly the visit may not happen. My heart broke with his response “Why do the girls mom hate us so much?” “I don’t know, you have done nothing wrong Declan don’t worry” I replied sadder that with all the stress and loss he is feeling right now he now also feels that there is something wrong with us and this situation.

Aiden on the other hand was excited to just be normal and hang out with Delilah chatting, watch movies, play games in bed. One email I received from Delilah while we were away was so heartbreaking to me:

My response:

“Oh hunny I don’t want you to miss us! I don’t want you to be sad! be hopeful and happy that this is a possible cure for Aiden. It is kinda exciting in a way or that’s how you can try to look at it. Only a handful of kids get picked from around the world to come to this amazing hospital and try treatments that are not available to other kids right now. Aiden being in this trial could save 100’s of kids with cancer in the future which is pretty amazing. Try to look at the positives. This is something you guys are very much apart of. You have seen Aiden at his best and worst, You have brought out the best in Aiden so many times which is unbelievable special and not everyone can do.

I know it is hard. I miss you guys like crazy too. It was really hard sitting in this stupid room all day knowing all our family was celebrating together for your birthday and we could not be there but it also made me happy knowing that you guys were all together and having fun because that’s what life is about and that’s why I have now left “my life” twice to take care of Aiden so that we can be apart of those fun activities with everyone. What you can do for us while we are here is just be happy and free and enjoy life! You are very much like you dad in sooooo many ways! He too was soooo very sad last week. I miss making you guys laugh at me but all we can do is just make the best of it! It is not forever it is just another “adventure” , sometimes I pretend I am just living in a movie and this is not my real life because it really is so strange and Unreal sometimes. I can guarantee you though that before you know it we will be back or you guys will come up here and visit. And then summer will be here and we will be finding random places to swim again!

And I am not going to lie, I really like the FaceTime and the pen pal it is kinda fun and different. Last time I was away with Aiden I felt all by myself a lot of the time but now I have all these amazing little ladies and an amazing man in my life that make it not so bad!

Like I said you are part of an elite club now and with that comes great responsibility lol to be free and happy and be a kid! Do not worry, do not be sad there is enough sadness in these hospital walls with so many parents fighting for the kids lives that I just want to see you girls and lynkon and your dad happy and healthy while we are way!

And that spot in bed is still mine!!! And Aiden on one side and you on other when we get back and we will binge watch vampire diaries and eat candy all night when we get back!!! You might have to fight Aiden for the chocolate

Love,

Stephanie”

This is so hard, knowing what the right thing to say to our children is in these types of situations let alone trying to navigate around a very high conflict separation and not let ourselves get swept into the viscous cycle because then we are no better.

I really am just at a total loss though. I even tried reaching out to the mother for the first time in almost 2 years while we were away and before we knew the plans to come home:

From: Stephanie Verk <sverk@icloud.com>
Subject: Itinerary and Travel Plans and Reach Out
Date: March 6, 2020 at 11:49:25 AM CST
To:

Dear ….
I am writing to you as a fellow Mother in hopes that you can for one minute put yourself in my shoes and do the right thing. Time is such a gift that unfortunately people take for granted all too often.

As you are well aware my oldest son is terminally ill. Imaging how you would feel if a doctor told you Delilah only had months to live. Whether you like it or not your girls have a very good relationship with my boys. This is not something that you can control and the more you do the more it will backfire on you. As your kids grow up they will see the truth of their parents based on actions they have seen. My parents separated when I was 18 and it forever changed my mother and my relationship. I saw her pour bleach on my dads clothes, call the cops on him and just manipulate my brother and me over and over again trying to get us to choose her over my Dad. Unfortunately it backfired and it drew me closer and closer to my Dad as he was just stable and I realized what my mother was doing was not something a good person does and it was not something I wanted to be around. It breaks my heart to this day the estrangement between my mother and me but the damage was done long ago. I understand now that she was just hurting but not as a child. You have 3 amazing girls and I would hate for them and you to fall into this pattern but based on all the bully and harassment you have put us and your girls through over the last 2 years I am very fearful that this is the path.

You do not know me, that is your choice, but like it or not I am a good person and I deeply care about your girls and there is no doubt they feel the same towards me and the boys. There are many times your girls say negative things about you and I reprimand them to their shocked eyes. I tell them not to talk bad about you and tell them you love them very much and are just hurting. I tell them all they time that I am not trying to replace you and never could. I also tell them that things will get better and that is something I really hope for. This constant fighting and control and energy spent on these silly arguments can not feel good for you, think about what that feel is like for a 10, 8 and 5 year old. This bitterness you feel to Jay and I will not take you anywhere good I can assure you.

One of the hardest parts of having to travel for these treatments is leaving behind friends and family. We honestly sit in a room for most days between appointments. I try my hardest to give the kids good memories and adventures and activities whenever I can. I try to teach my kids about compassion and love and understanding. The kids were all very upset when we left to Memphis but we made the promise that we would be able to visit. Delilah specifically upset that “she feels everyone she loves leaves her.” She talked to me onetime when your neighbour passed and how guilty she felt for not going over to say good bye. I told her that as long as she remembers the good memories that is what he would have wanted, not him laying sick in a bed. Aiden is doing surprisingly very well right now and laughing and smiling lots that is how I want to kids to remember him. Not at Christmas when he was in a bed essentially unable to lift his head up and we went to palliative care for what I thought was the end. The truth is Aiden will most likely not make it past 10, another reason for me reaching out to you is to let you be aware that your girls are going to need you through this. They will need help at the loss of not only their friend but someone they have lived with now for a year and considered step-siblings.

The kids have been looking forward to this visit as they talk about it when we FaceTime over the weekends. It is also very good for the kids to see where Aiden is and that he is ok right now (this is something that can change very quickly). I know you do not want to see it but we are a family and you denying them to visit would be like telling Rowan she could not say goodbye to Deliha if the tables where turned. How would you explain that? This trial is very experimental, Aiden has a lot of disease and the truth is we may not all be coming back from Memphis. Why would you not give a dying kid a week with people he loves, people that make him laugh and play and just make him feel like a normal 10 year old boy. When they are all together they are all just kids and they do not see the sickness and it really is beautiful to watch them all interact. Why would you not give your girls the opportunity to see that the world is so much bigger than the protective bubble we try to put them in. To show them what compassion and sacrifice looks like so they grow up appreciating all that they have and all that you as their parent provide for them. They have a loving mother, and family and friends and good school and nice homes, trailers and the ability to go on fun trips with both parents who love them.
Anyways, I have attached a rough itinerary as Jay said you requested. We are allowed 5 at the Ronald Mc Donald House overnight where Aiden, Declan, Lynkon and I are staying. The plan is the girls will stay at a rented condo close by for a couple days then a hotel for the weekend and we will visit back and forth in the day between appointments. This is not Disneyland or some amazing Florida vacation it is honestly a simple trip to show Aiden that life is worth fighting for and he has people around him who love him and want him to live. I really hope you can contribute to this goal by either saying yes and signing the attached travel consent form and giving Jay the passports and then we can book the accommodations or just say no and live with your conscience that you denied a dying child time with his family. You will have to explain to the girls what your reasoning are as I will not be defending you actions this time. And when you go to court for separation to Jay you will also need to explain it to a judge. There is nothing more to discuss, too much money and time has been spent on this already when it really is a simple yes or no.
Sincerely,
Stephanie
“

I guess I live in this nice bubble where I think everyone deep down has a good heart and that me reaching out would be the olive branch that breaks this awful patten we have fallen so deep into but unfortunately I was mistaken. The reply to Jay from my email was that I was mentally unstable due to having a sick child and how dare I harass her like that.

So now I am once again at a lost. I am usually pretty good at making the best out of bad situation but I really have no clue what else to do. Jay just returned from trying to pick his girls up at 9am as per their agreement yet all he saw was his girls sad faces through the window and the cops being called on him. This is what was expected but I told Jay at least your girls saw you tired to make the attempt to see them. I asked Jay last night if he thought she would release the girls for the week if we were not here, which we really do not know the answer but it saddens me to think we are the reason Jay is now loosing a full week with his girls he loves so much because of us.

Aiden is so good right now, the steroids are working, it would be a perfect visit. I hope everyone pauses and realizes how precious a gift time is, it is taken for granted more times then not. Do not wait to run that marathon you dreamed of, or try out for the school play, go on a trip or just simply forgive someone or tell them you love them because next thing you know the chance is gone and you can never get it back. I don’t know how Aiden will be in two weeks or if he will even be here and it just breaks my heart that this is even something we are dealing with right now but more importantly that Aiden and Delilah will not get to watch vampire diary’s in bed with candy and we can be happy and just show all the kids how lucky we are despite cancer. It is these tiny moments that make up life and are to cherished. It are these tiny moments that help in the grieving process as you reflect back on times shared.

Last week, Jay called me from the restaurant he had taken his girl to supper at as Rowan was screaming and crying and yelling “I hate you, I hate you” I FaceTimed Rowan and she ran to the bathroom with the phone to chat and she just looked so incredibly sad. I asked if she missed Declan and she safely nodded her head. I said how sorry I was that she was feeling so sad but her dad and I love her very much and we would see her soon. She gave a small smile and said ok. I told her to take breaths and just stay in the bathroom a little bit to calm down. She again gave small sad smile and said Ok. I then got called from the doctor and had to go it was so sad having to hang up and so sad not being there. Later Jay and I talked about what happens at the restaurant and Jay said after Rowan calmed down she was able to tell him the real reason, it was not that she hated him it was that she just hated everything and did not know what to do! These are big emotions and situation for a little girl to go through heck for anyone to go through and I don’t know what the answer is. Jay and I just try to be stable and consistent and show them love and that is all we can offer our children at this point.

I am not posting this to be vindictive or vindicated I am posting this to be honest and raw as that is what my blog is about. I can tell you for sure I am not the only one who has gone through this, gone through times you feel like the whole world is against you and you are being attacked from every side. It is the true face of what families go through with having a sick child. It is the reality of many separations, as I know so many of my friend are struggling through high conflict co-parent challenges. We have no more energy to fight and my focus needs to be on creating positive energy in my home and for Aiden right now. It is me trying to show how much actions hurt so maybe someone in another situation will stop and think about this story and think about the pain and devastation we are feeling right now and how it affect the children and it will help change future actions. And I am really just sad on so many levels…..

Following Hope

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I would like to start this post just by saying how much we appreciate the love and support we have received on this stage of our voyage. We really have a crew behind us and it means the world knowing so many people care and are traveling this rough cancer sea along with us.

I sit here on the plastic coated parents chair, in a white sterile room of plastic gloves, and poles and monitors. Declan is laying on the floor watching a Minecraft YouTube video. I am too tired to tell him to play his Reading Eggs game. Aiden is laying on the stretcher bed in warm white blankets, staring drozzily at his iPad. He keeps telling me he is bored as I keep suggestion more activities. We can play Uno, I can read to you, they may have a board game I can ask, we can colour? All to which the same reply, No.

This is our first day officially enrolled in the SJDawn study at St. Judes Children’s Research Hospital in Memphis Tennessee. The day has consisted of an EKG at 7:00 am then blood draw then Aiden received his first dose of …… then another blood draw and 2 hours later another blood draw and another EKG then 2 more blood draws each 2 hours apart with last one 5:15pm. Finally our hospital day is done and we go back to our hotel style room and get ready to do it all over again tomorrow. I look back over the last couple weeks, over the last couple months and try to reflect on the events that got us to this truly amazing hospital and it just seems so surreal….

January 6, 2020, The first day back to school after Christmas holidays. Most kids are excited to see their friends again, show off their new outfits or gush about the lot of toys Santa dropped to their house. For us, we are preparing for MRI Day. The boys were at their Dads on the weekend and the appointment is not until 10:00 am so we decided Aidens Dad would drive him this time. I usually do but at this point I really just want the results. It is hard not being there but I also know I need this break. I send Josh multiple texts of questions I need him to ask.

“Get them to check his stomach cause he has been having bad cramps since the new G-Tube was placed.”

“Ask about St Judes, if they heard anything back yet. It’s been two months since they sent his tumour this is ridicules!”

“Make sure you ask when we will get the MRI result, and you want them back this week!”

“Make sure you tell them you want the scans sent to Sick Kids for second opinions ASAP and I am not waiting two months.”

Reading my texts over again, I can see how I may come across a little over bearing and maybe it was better for me to just go but I can’t imagine sitting there for the three hours as Aiden sleeps in the MRI machine. After the last week at Rogers House, I just need a little break from the hospital. Over the last couple years I have lost more and more faith in our health care system and have learned you need to be the advocate for your child. To follow your gut and push for the best possible care.

I get updates for Aidens Dad throughout the morning, Aiden is doing well and came out of sedated MRI no issues. Now the worst part….waiting. I get an email early Tuesday asking if we are available Wednesday to review the result. I know it is not good based on this fact alone. The faster you get the results back the worst it is. I also ask if Aiden should be there with the response that they can arrange for someone to sit with him while we review the results. Another sure sign this will not be good.

Wednesday morning comes and Aidens care team, Josh, Jay and I all squeeze into a small examine room. We are told what my broken heart already knew, there is significant growth. When I close my eyes I still see the screen with these three big masses making up what looks to be the majority of his head. It is the worst scan yet. Jay squeezes my hand a little tighter not saying a word as he is now all too familiar with scan result days and what I need. Once again we are told this is it and to take Aiden off chemo. I know it to be true but still in disbelief. I have lost so much trust in our home hospital in the last year. It is hard for me to absorb the news this time.

In the summer we were told the exact same thing, it was not working take hi off chemo but then to only a week later be told that it was working to go back on. I plead to our oncologist that there must be something. This is the pattern, you tell me my son is dying I say NO, not yet. I plead there must be something else to try and then we try something and it works for a year or so and then repeat. I ask if she sent the scans to Sick Kids for second opinion. I cry out in frustration. Why we have not heard back from St. Judes when Aidens tumour was sent months ago to be tested. I just really do not believe it. Months ago when we first heard there was an opening he was stable with minimal growth. I am so scared Aidens scans will be too bad now to even be considered for this trial. .I don’t even remember anyone else talking in the room although I am sure there is. I know Josh says something and gets up first and leaves. I keep drilling the oncologist. “How can I trust you this time when only 3 months ago you said the same thing and ended up being wrong!” I don’t know how the conversation ends but eventually Jay and me get up and leave. As I leave I make the team promise to follow up with St. Judes the next day and Sick Kids and anything else that is remotely possible. In the truck I cry onto Jays shoulder, shaken and unable to process the news we just received.

Back at home, Aiden is looking so good. I know they told me to stop the chemotherapy and that it is not working but I just can’t. That night I give him his regular dose, and the next morning. I feel like I am being sneaky somehow. I hate what the chemo does to Aidens body and I know they are telling me this to relieve as much discomfort as possible but every fibre of my body is telling me not to stop. I tell Jay the next night that I haven’t stop giving Aiden his chemo and he hugs me and tells me he understands and to follow my heart and intuition. I feel guilty but something inside of me is telling me not to stop. The next day Aiden is in great spirits again. We go swimming. The next day Aiden goes to school. How can this kid be dying? He looks better then I have seen him in MONTHS. I email our hospital caseworker and tell her I need another scan in a month and I need to keep him on this chemo protocol for just one more month to accept it. I need to hear back from St. Judes and I need an appointment Friday for Aiden to get assessed in clinic. I need them to look at Aiden and see how great he really is doing. They need to fight for him too!

I email Josh and tell him I have not stopped the chemo and ask him to please continue over the next couple days that he has the boys. I tell him I want just one more month on chemo. One huge mountain in cancer treatment we have climbed over the last 3 years that I have not discussed much is when two parents have VERY VERY different views on medical treatment. But he agrees and I am so grateful in relief. I also tell Josh that he should take Lynkon and Aiden swimming that Thursday. Aiden has pretty much laid in a bed for 2 months because he had been feeling so awful. But now he is eating and gaining weight and playing and is really just engaged in life! He needs to build his mussels and his strength back. Josh also agrees and Aiden goes swimming twice in the same week! and he is honestly happy! How can this kid be dying?

Friday is here and I take Aiden into his appointment. We meet with the Palitive team and the oncology team. They all agree. Yes this is the best they have seen Aiden in almost years! Again, he is engaged and sweet and his personality is shinning. I ask if it is normal progression to bounce back like this and told not usually. When kids have as much growth as Aiden it is usually a steady decline from there. I again express my fears that St. Judes will look at the last scan and he will be disqualified. I am worried that our oncologist will not recommend him anymore. I am told that based on how Aiden is looking today that she will endorse and push for him to be accepted to St. Judes still. I ask about the trial and told they do not know much but it is a phase two – meaning potentially curative. I am told they did hear back and needed to send a couple more items which where sent snail mail. FUCKING SNAIL MAIL! I can not believe in all the technology we have that the hospitals still send stuff via postage. I feel relief in knowing that St Judes is not off the table but anxiety grows as I know every day we wait is literally a matter of life or death. Aiden and I head back home hoping against all hope that the St. Jude’s trial comes through.

Finally, Wednesday, January 26th I am just sitting down for lunch at Jaks Dinner in Kanata. It is Declans 8th birthday on the 29th and I just finished picking up his gift. I feel good. I check my phone as I wait and see a email from our caseworker, “V”. “Call me, we have news on St. Judes.” my heart pulsates harder and I immediately dial her number. Voicemail. I email her back and try to phone again and then again. I look around the restaurant fighting back tears. My phone rings finally, “Aiden’s tumour passed the genetic testing and he is eligible for the trial at St Jude’s!” I am shaking and ask when do we go? I am told that they still do not know much details just that his tumour passed and he is accepted but it is usually pretty fast she would think. She tells me she just got off the phone with Josh and he is on board too. I thank ‘V” and the tears pour down my cheeks. I pack my food to go that just got delivered and shakily go to my van to call Jay, my brother, my dad, my list. I am still in shock and in fear that something will still go wrong but this is one more step closer.

Then the waiting… next day still nothing. Next day still nothing. I ask Virginia if this is normal. She tries to assure me not to worry they are probably getting their paperwork in order and she tell me she has been emailing them asking what the next steps are. I ask for their phone number directly and told that they do not usually give it out but to hold tight and keep carrying on like we have been. Earlier in the week, Aiden, Declan, Josh and I met at the Rogers House. We had decided that we wanted to talk to the boy together with professional help to talk about Aidens scan and just to determine where Aiden is at in his understanding. Declan has been through more then his share and we want to prepare him as well. The meeting is actually very interesting. The doctor asks Aiden if he wants to know about his last scan “No”.

Declan pips in Yes.

The doctor starts to explain that from the last scan it shows Aidens cancer is growing. Declan is cuddle up to Josh on one side of the L shaped couch and Aiden is next to me on the other side. My arm around him and tears slowly flowing in silence down my cheeks as the doctor talks. Aiden is so quite. Declan continues with questions.

Why can’t we zap it out – I say “we did that with radiation “

“Why can’t he fight it like ninjas” – I say “that is what we have been trying to do with the Chemo”

“Why can’t we just cut it out the bad guy” – I say ” Again, we tried that too.”

The excitement and joy that was once on Aiden’s face from the white chippits he had been eating earlier is replaced by an unreadable emotionless face. We decided that is enough for the day. And I follow the Palliative Doctor with the same name as me out of the room for a private conversation. “So what do you think? He does not seem to really want to know right?” She agrees and she agrees not to push him. Some kids don’t want to know, some kids want to know everything. We talk that we may still be going to St Judes but scared cause it is taking so long and just want to be prepared. I set up another appointment for the following week for one-on-one individual counselling for the boys and head back to the room. Aiden is back in full smiles as Josh had just promised to take them to a CHOCOLATE STORE!! Watch out white chocolate here he comes.

The boys are with Josh for his weekend again and Aiden is still feeling really good and happy and eating but everyday I just keep picturing Aidens tumour growing. We are going on week two since told Aiden is eligible. First thing Monday morning I call V and this time demand the number for myself. This is ridicules. This time V gives me the contact and tells me to reach out. “I may have better luck” she tells me. I hang up the phone and I dial the new number. No answer, I leave a voicemail. It is mid morning now and I am driving up March Road having just had a call from the school “Declan is having a very difficult time I think you need to come get him.” I try calling from the van Bluetooth on the way to the boys school. Ring Ring. I am amazed when I hear a women voice with a southern accent answer and greet me with “We are so glad you called! We have been trying to get a hold of you! Can you and Aiden come to Tennessee tomorrow to start?” YES! I pull over to the side of the road, I am vibrarting. I am so happy and in shock once again. We exchange a couple details and I tell her I will be home in 10 mins and can send her all the information and passports she needs. Every fibre in my body pulsates. I go the the school to get Declan at the principles office. I do not even know if I am making sense as all my words jumble from my mouth as I tell the school we are going to Memphis tomorrow and I am taking Declan with us. There are lots of hugs and congratulations and tears and Declan say bye to his class. I am actually shaky and in a daze.

I get home and instantly send photos of our passport to the email I was given. I write that Declan will be coming with us, what else will they need and what is the cost. Everything is really just a blur now. I remember Declan with a huge smile. He is so happy, I am so happy. I text Josh to tell him I am home now and to come inside when he drops off to talk. Not something that usually happens so I also tell him I heard back from St Judes. He will be here in 10. I call Jay and tell him what I can manage to get out, my mind is all over the place but we are just happy and have hope restored again. Aidens Dad comes in and I just blurt it out before he has a chance to take off his coat. “I just heard back from St. Judes. Everything is good to go and Aiden, Declan and I are leaving tomorrow”.

A look of shock and confusion overtakes Josh’s face.

“What is the trial,? What are the drugs they will use? You are taking Declan?”

I should remember after 10 years of being together that Josh’s processing and decision making speed is very different then mine. I don’t know what else to say though or how else to present all that has just unfolded over the last few hours.

Aiden is sitting on the couch looking at us. I sit beside him and wrap my arms around him. “We are going to Memphis Aiden, to one of the best possible hospitals in the world for Cancer to try one last time to fight this awful Cancer! ” His face lights up as Declan is dancing around the room. Josh sits down in the chair. I apologize for the abruptness but what did he think was going to happen once the hospitals got there stuff organized? He said it is just so fast. I laugh and say we have been waiting for two weeks let alone months since his tumour was sent! Again he says he does not know about the drugs or what this trial is to my response, “Does it matter? What are they giving us here? NOTHING! There is no waiting on this, there is no contemplating it it is decided.” As I replay this exchange over now I just see all the reasons we never lasted in our marriage. It is not for either of us being bad people we are just so very very different.

I give Josh all the contact info I have and tell him to email the coordinator for more infomation too. Josh hangs out with the boys a bit longer and we arrange that we will all meet at the airport together. Lynkon will stay with Josh and we will just take one step at a time once we get there and figure the rest of the details out.

The timing is actually perfect as that evening Jay has his girls for dinner so we decided to have a goodbye celebration. My brother and his wife and their girls come over too. We order pizza. Jay and the girls picked up a ice cream cake for Aiden which I steal and claim as a birthday cake for jays oldest “D” and Jay’s 40th, which in the next weeks and we are so sadly going to miss. It is a great night. We are happy and excited and the kids are playing. I am a mixed bag of emotions and fears but I feel so surrounded by love and family and that is what I am trying to stay focused on.

Finally it is time to say goodbye. I look at my brother and Christine and Jay and know we are thinking the same thing yet trying to hide it from the kids. This may be the last time we are all all together. My nieces expression will forever be embedded in my brain as she turns from hugging Aiden goodbye on the couch. How can smiles and laughter so quickly transform to such sadness and tears? My brother and his family leave and now it is even harder. Jay needs to get his girls back to their mothers house for bedtime and we are already in fear of running late. We all exchange hugs and so many tears. I thought it was hard last time leaving Lynkon and Declan. Now I am leaving 5! Declan and ‘R” are so very cute as they exchange hugs and I’ll miss you’s. They have really become two peas in a pod. “R” is strong though and I am wishing she would share some of her strength with us all right now. Her and D and L shower Aiden with hugs and well wishes and it just so very cute but very rushed. They head out to the truck heating up. I follow to the door and see D standing frozen on the front step. Again the look in her eyes, glistening full of tears. I give her the biggest hug and try for assurance. “I know this is hard D, but this is a good thing. This is what we have been waiting for, a chance to save Aiden.” She cries deeper into my stomach. ” I tell her we will be back before she knows it and to not be scared. I tell her to go give Aiden another hug and tell him how you feel that is what he needs to hear.” Cancer teaches you not to wait to say I love you or express how you feel because the moment may not be there later on. I feel like she to feels the fear that is not said out loud and she runs back to the living room. The oceans have been filled on less tears than have been shed tonight. A couple minutes later she returns to the door and hugs me again. I tell her to take care of her Dad while I am gone and she smiles. I tell her how much she means to us and give her one last hug before telling her OK YOU REALLY NEED TO GO NOW! We both laugh. I stay on the step watching them drive away and fully break down. All of my fears surface that the truth is this could very much be the last time we are ALL together.

I pull myself together and head back inside with cheer in my voice. “Ok boys let’s get ready for bed. Mom needs to still pack.” The boys all settle down in Jay and my bed. I put on a movie for them as I try to figure out what to pack. The boys all fall asleep together in our bed and 2 hours later Jay returns and we fall asleep in the kids bunk bed crying in each others arms.

Morning comes all too early. I get the boys ready and Jay packs the van. I text Josh saying we are leaving Almonte and to meet us at Airport. It is happening, I still can not fully believe it. Josh meets us at the airport and we take photos of us all together. This is hard. I am leaving Lynkon once again and Josh is leaving Aiden once again and now Declan too. I try not to think over the last 3 years too deeply in these moments. I force myself to think positive and hopeful and really do feel it in all of my soul that this is the right decision. Final hugs and Josh leaves. Lynkon is still with me as I hold onto every last moment I can with him. The boys and I go to check-in line. Jay has now returned and entertaining Declan and Lynkon who are running around the Airport. Seeing Lynkon running around I know there is now way I could take him with us. We are checked-in and Jay comes to tells me some man is here for me. I turn around and see Jays Dad! He is here to help see us off and my heart is filled with such love. I feel just so incredibly blessed to have this amazing partner, the girls and this new loving family. This cancer is fucking awful but it has taught me to fully embrace all the good that life also gives. We all hang out for as long as possible. More hugs and tears and kisses as Declan, Aiden and I go through the gates. One stop in New York and a couple naps and we have finally landed in Memphis.

The boys are tired but they have been amazing. We work our way through the airport and find the prearrange taxi waiting for us. It is hard to tell what the city actually looks like. It is dark and we are all too exhausted to even really care. We go through a security gate and arrive at St. Jude. I have been given all the instructions prior on what to do on arrival, how to register and that we need to go through a quick assessment before we can head to the housing they had set up. Again, the boys are amazing. We finally get to our room a little past one and all snuggle in for much need sleep.

Morning comes all too fast. Our appointment are not until late afternoon so we go for a walk to this pyramid we can see out our window. It is a huge bass pro shop which is pretty crazy inside. after only checking our a small section of toys and the fudge shop we head back over to the the hospital. I am just so incredibly thankful and hopeful that we are finally here. Our adrenaline is on high as everything is new and exciting. It really is a beautiful hospital. Aiden gets blood work done and then we are scheduled to meet the fellow working on the study. Aiden is still looking really great from the outside. It had taken so long to get here but I have not noticed any physical signs of tumour growth over the last couple weeks. Eating, laughing and being a pretty normal 10 year old. What more can I ask for really? We are now in the clinic. Declan has found Minecraft on the Xbox in the waiting room and is quite content waiting for us there. Our names are called and Aiden and I head back to exam room. A small pretty female doctor enters and introductions are made. The conversation start off pleasant but within minutes of review all of my hope was replaced with devastation……

January 6th to February 5th in Pictures

Ok this now brings us to February 5th but it is 2:43 am and I am tired…If anyone wants to spell check for me go ahead I will not be insulted! Will write more soon…