Mommyyyy, Mommyyyy.” I awake in a panic. I call out Aiden’s name but then realize he is at his Dads. “Where is my phone?” I look to my side table, it’s not there. I rush downstairs and pick up my boyfriend Jays phone from the table. “What’s the number? What’s the number?” I send text to Aidens Dad, “Is Aiden ok?” Panic filling my body. I could hear Aidens voice so clear calling for me. He needs me, something must be wrong. I call. No answer. I run back up the stairs. Jay turns on the light to help me look for my phone. It is on the floor, just under the bed, dead. Jays phone rings, it’ Aiden’s Dad.
“Is Aiden ok?” I answer the phone in panic?.
“Yes, here someone wants to talk to you…”
“Hi Sweetie, how are you?” My body relaxes. He sounds great. He sounds happy, He sounds alive.
I feel like I am living a nightmare that is on repeat. The last three weeks have been a fog. I feel displaced, I feel like my head is just not working. I am told by my therapist that this out of body experience is quite normal for my situation. I am told that when a body goes through trauma it tries to protect itself. My mind is honestly trying to protect itself as it leaves my body, just hovering slightly above me. I once again move into this state of feeling like I am just a spectator in my life, a narrator in a movie but not really a participant.
Day’s before New Years, Aiden lay in my bed, hardly able to walk. Walking to the bathroom only a couple steps away was a feat comparable to climbing Mount Everest. He was just so tired. His head ached everyday with Tylonol around the clock. After two days with no sign of him wanting to even lift his head I wrapped him in his soft Minecraft blanket and drove him to CHEO. Fearful it may once again be a be a shunt blockage but more so fearing the worst, that the cancer was progressing. He had an MRI booked for Monday but I could not wait the 4 days. We were ushered right into Emergency and after a quick assessment Aiden was sent for CAT Scan and X-ray. He did not resist any of the nurses pokes and prods, he was just too tired, his fight was going. The scan showed this extreme fatigue was not the shunt. My body trembled as I was told there is a lot of swelling showing and although it is hard to give exacts because the CAT scan is not as clear as the MRI it looks like the cancer is progressing.
The little grey haired doctor asks what I want to do? “I don’t know, I just don’t know.” She hugs me in her tiny arms and expresses she does not think this is the end yet but it is up to Aiden at this point. She tells me we should go over to the Rogers House for a couple nights so they can give him a steroid and monitor. The steroid will help with the swelling and give him the kick of energy he needs right now to get him moving again. The little doctor looks at my tear stained face and tells me she does not think I should be driving in the state I am in and assure me the house is very comfy. Ok, and we head over. A whirl of monition, signing of paperwork, review of medication and filling nurses in on Aiden’s “story” and we are finally settled. To my surprise the room is very nice room with a large bed and almost hotel like comforter, you know the kind that makes you feel like you are sleeping in a cloud.
Aiden gets his first dose of steroid that night and we fall asleep together, Aiden wrapped tight in my arms. I wake to the sun rising out the window. I can not believe it, I slept the whole night and it was actually the best sleep I have had in weeks. Aiden wakes up and he does looks a bit brighter. The nurses come in for morning rounds and he is able to talk to the them and is sitting up in bed. The next days are a blur but the steroid seems to be doing the trick as Aiden can move from the bed to the couch and awake for longer and longer periods. Aidens brother Declan comes to stay with us for a night and we all cuddle in the big comfy bed. He is so lost in this battle. He fears he is missing out or that “Mommy and Aiden are not coming back” every time we go to appointments. I try to have him involved as much as possible but sometimes it is just not possible or I want to protect him from this other world. The house really is great but after that night I ask the Doctor if she thinks we are able to go home. She looks Aiden over and with a smile she agrees he is doing much better. She says that she does not see why we can not go home. It is the morning of New Years Eve and it would be nice to be home with all the kids and Jay’s mom who is visiting from Hawaii and I absolutely adore. I really just want our crazy blended family altogether to bring in 2020. I ask the Doctor to talk in the hall for a minute as my fears start to out-way my desires. I grill the doctor in privacy, out of Aidens ear shot.
“Are you SURE we are ok to go home?”
“Yes, I have been worried about Aiden the last bit but you are ok to go home.”
I make her promise that I am not going home to just wake up and find Aiden dead in his bed which is the fear that overwhelms me day and night. The tears seep from my eyes. She tells me the steroid is not a long term fix but it really seems to be doing its job. She tries to assure me not to fear that in most cases of medullobastoma it will not be that sudden but she is honest as she says Aiden may only have “short months” left and to prepare. I have heard this before. There will be signs, he will get more headaches, tolerant his feeds less and get more and more tired until he eventually just sleeps. I try to make her tell me exact timeline but knowing this is not possible. We end the conversation with me being hugged and told that I am doing everything I can and have been a great mother and advocate for Aiden through this voyage and that he is so lucky to have me through this. I wipe the tears from my eyes.
Back at home the kids are in full fun mode. I am filled with joy from the energy and the chaos and the livelihood the kids all bring to the house. Aiden is so happy to be home too. Shining his smile and starting to crack jokes again. He really is doing much better. We all bring in the New Years with yummy snacks and the Floor is Lava game. Aiden uses the microphone to call out the colours from the wheel to the other kids and I really do feel so blessed in so many ways! We made it through another year! Fuck You Cancer!
The weekend is coming to a close, Aiden is still resting lots and of course I still worry. Jay and I talk and we decided that it is time to have a conversation with all the kids. We do not want them to feel there are secrets in the house. We do not want them to make up worst fears in their heads. We want them to know they can ask questions. We want them to have time to prepare. I want to explain why I have been breaking down in tears throughout the day or why my patience is shorter then usual or just that maybe sometimes I will not feel like playing and doing activities like I usually do. We fill bowls of Ice cream after dinner and let the kids know we want to have a “Family Meeting”. Aiden is upstairs in my bed resting. We all went to Jumanji 2 earlier that day and although he had a great time he is quite tired now. We start off with light conversation. What was their favourite part of our Christmas week together? Did they like the movie? etc, until Jay’s middle daughter, “R”, pipes up “Ok! enough chit chat, what are we REALLY talking about….”
and so we begin…
“We want to talk to you about Aiden. You may have noticed that he is not like he was before in the summer and he is sleeping a lot more.”
All the kids nod with solemn looks.
I continue, “Aiden is really sick, you know in the Jumanji movie today they said “Growing old is a gift?””
All the kids nod.
“Unfortunately, most likely, that is not a gift that Aiden has. We are not giving up hope and we are still trying to find a cure or a different treatment for him. There is a possibility of something in the States and Aiden has a MRI Monday and I am still trying with the hospital to find something else but we wanted to let you all know that when we were at Rogers House I was told that most likely Aiden only has short months left and most likely Aiden will die from his Cancer.
We want you guys to know that if you have any questions please ask us and most importantly we want you to know how lucky we are to have been able to make all the great memories we have. I look around the table… each kids so different in personality and reaction. D’s eyes filled to the brim with tears and a look of disbelief. “I never thought it was that bad” she says as the tears slide down her cheeks.
I continue. “We are so lucky to have so many great times together and that is what we focus on. That is why I try to make the most of everyday and to show you guys how beautiful life is with crazy activities and adventures. That is why we need to appreciate that we can go tobogganing or just run around because that is something that Aiden can not do. Most houses do allow snowball fights inside or go on spontaneous RV Trips to Sana’a village. In the summer, I really thought that Aiden would not make it to Christmas and that is why I wanted us to go and have a Christmas in July together as a family. Aiden is a fighter and he has tricked the doctors before but we want you guys to know now because it is very serious and we do not want you to be surprised or scared if the time comes.”
I see the tears start forming in R’s eyes, but just as quick as the tears form she forms a joke “So can we have more snowball fights in the house?” It is so surreal seeing your own insecurity defaults in a child of 8. I have been told many times in my life “I think everything is a joke” but this is my way of protecting myself. I try to brush off my deep emotions with a joke or acting like it really is no big deal. But as I see myself in this sweet 8 year old girl it breaks my heart more.
We ask the kids if they have any questions. Declan who is sitting in the chair right beside me expresses his worry that Aiden and I are leaving again. I assure him that if we go anywhere that he will be coming this time, he hugs me and this seems to comfort him. The girls asked if they could visit which of course was a yes. Jays youngest of 5, “L’s” reaction was in the middle between R and D and Lynkon, sitting on the dining table at this point breaks out in, “We will, we will, rock you!” We all laugh, thank you to the innocents of a 4 year old to bring the joy back to the room. The kids leave the table to continue their play and Lynkon continues to sing. Jay and I comment to each other that overall it went the best it could have and we feel better knowing that the conversation is now open and they will have time to process. I have had 3 years to process and I still have no clue half the time how to get through this. It is hard to really know how much kids understand or comprehend of death.
I head upstairs to check on Aiden and notice the door to the girls room is closed. I knock softly and open the door. Under the protection of her lime green and white duvet on the top bunk, “D” lays with tears rolling from bloodshot eyes and down red cheeks. My heart pulsates a little faster as a clench my jaw to hold back my own tears. I do not remember who speaks first but words escape and “D” quietly cries to me, “Aiden is my Best Friend, and I just can’t picture him not being here.” I am shocked by the simplicity yet the resonating truth of this. I confirm that this is exactly what I feel too. It is so impossible to imagine a world without Aiden. I tell her how incredible lucky I feel to have her in our lives and how special it has been that Aiden has her as a best friend. Aiden hardly goes to school and does not play with many kids so it is so amazing to see how Aiden lights up when the girls come over, and specifically lights up with “D”.
I explain to her that that is an incredible gift that she has given Aiden this year and that is something she should be very proud and happy about. I also explained how it is so important to live each day to the absolute fullest and just be true yourself and your happiness in life because there are so many uncertainties in this world and that is something that Aiden has taught me through this. I then make a joke which I forget but remember it makes her laugh and I ask if she wants to come watch a show upstairs with Aiden and I. With a smile she hops up and runs up the stairs to jump on the bed beside Aiden, who gives her a big smile. Soon all the kids fill our room and we settle in with popcorn and snuggles and Kindergarten Cop. Our last slumber party of the Christmas break. The next morning the girls head to their mothers and the boys to their Dads. The house is so quiet which causes me to feel uneasy. The calm gives room for my anxiety to grow but I also know I need this time to absorb all the events of the week. I need this time to freely sob and to just stay in bed and sleep and recharge as much as possible. Aiden has a MRI on Monday which will give a clear picture of how much growth there is and what the next steps will be. It really is just one step in front of the other at this point, to just keep swimming…..
How to Help
I am so incredible grateful for the support we have and continue to receive through our friends, family and community. December 2017 we were given a life expectancy of a couple months. We are now in year three and fighting everyday to beat this awful disease but I have been unable to work in order to care for Aiden and receive no child or spousal support and very limited social service funding. Donations will help with all of the medical, travel, and accommodation expenses that I have incurred over the last three years as well as those expenses that are still coming. Donations will help with daily living expenses and will ensure the boys have great memories together for whatever time we have left.
If you follow Aiden’s Voyage on MamaOutpost please consider making a donation. Any contribution would be greatly appreciated.
Stephanie (aka MamaOutpost)