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.
How to Help
I am so incredible grateful for the support we have and continue to receive. December 2017 we were given a life expectancy of a couple months. For 4 years Aiden fought bravely, travelling from Toronto, Ottawa, Boston and Memphis to try and win the war against his Brain Cancer. Aiden gained his Angel wings April 25th, 2020 surrounded by his loving family. Donations will help with all of the medical, travel expenses that we have incurred over the last 4 years. Donations will also go to help pay for funeral arrangements and allow time for to grieve and learn this new life without being an Oncology Mom.
If you follow Aiden’s Voyage on MamaOutpost please consider making a donation. Any contribution would be greatly appreciated.
Stephanie (aka MamaOutpost)