Archives for April 2020

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.

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.