June 19th, 2019
Yes, we are back in Cheo. The last couple days have been a blur of ambulances, ICU, Isolation, tears and now, thank god some smiles.
Saturday morning I woke at 5 am unable to fall back asleep. I went downstairs to my navy couch to putter on my computer with a coffee in hand. I soon hear the tap tap of little feet and little Lynkon is upon me with bright eyes and a huge glowing smile. He climbs up on me, working his little body under my arm, snuggling in so close to my body and under my soft grey housecoat. He quickly drifts back to sleep.
Around 6 am my boyfriend Jay comes downstairs, after a good morning greeting and a pour of coffee, he goes back up the stairs for reasons he now does not remember. I hear Jay call my name,
“Steph, come here”
I reply, “What is it? I have Lynkon on me.”
“No, come here.”
I hear the urgency in his voice now. I maneuver Lynkon off me to keep him in his peaceful dreamland and go up the stairs. I no sooner step into Aidens room than I am forever marked with the image I wish upon no parent. Aiden lay wide eyes, vomit dripping from his mouth. Jay is close to him I think saying his name and he looks up at me with lost eyes. Auto pilot turns on as I immediately yell to Jay to call 911, “CALL 911!” I scoop Aiden in my arms. His bright purple “power, peace and purpose” Karate T-shirt is soaked and the the soft white blanket he slept with soiled. I realize he has no pants on as I move the blanket and he urinates. I pull up the blanket around his lower body cradled in my arms and rush down the 27 stairs and to the front door. Jay right behind dialling 911.
“Jay, get me to the hospital! Get to the truck!” We are out the front door, Aiden hanging in my arms. I have no shoes, I am in my housecoat and my pj shorts and tank top that are now soaked with bodily functions. In the truck I keep yelling “Aiden, Aiden, stay with me!” “AIDEN AIDEN”
The truck bluetooth picks up the 911 call
“What is your emergency?”
“My son has brain cancer I just found him unresponsive in bed,” ‘
AIDEN AIDEN AIDEN” I shake him and yell. We are down Ann street and turning, almost halfway to the Almonte hospital, a couple minutes away.
“Do you need an ambulance” the dispatcher asks
“No we are on our way to the hospital” I say”
“Then what is your emergency” they ask again.
“We are on our way to Almonte Hospital let them know we will be there in 1 minute.”
“AIDEN AIDEN AIDEN AIDEN AIDEN” I repeat over and over, the strength in my voice now being replaced by aching sobs. We are over the Bridge, almost there.
“Stay with me, god please I am not ready” He is so pale and still in my arms. We pull up to the ambulance emergency door and I am out of the truck with my 10 year old cradled in my arms and yelling for help as the automatic doors open. I am ushered to the emergency room and lay Aiden on the hospital bed. There is a blur of people and I am asked what happened. I explain the background and that I found him like this. I tell them I had been warned that seizures may occur but not likely based on last scan.
“Was this a seizure? Is he breathing? Is he ok?”
PLEASE BE OK! Jay gives me a look and I say yes go back to the house for the other two boys hopefully still asleep and call Aiden’s dad.
The doctor continues to examine Aiden who is still unresponsive.They check his eyes which are dilated with black pupil. The nurse hooks him up to some monitors, and checks his vitals. I am hunched on a stool beside Aiden head on his body and trying to hold him and all I remember is sobbing and my head pounding. There is a nurse beside me trying to help me breath. “I’m going to be sick” and she jumps to grab the nearest trash can as the contents of my empty stomach come up.
“Breath, I need to Breath.” Aiden is breathing and hearth rate is ok I am told, but I can’t seem to catch my breath. The pain in my body overtakes me. “I can’t do this” I sob, “I’m not ready” I try to hold him closer as his body tenses up again and his eyes start to move. “What’s happening? Is he ok?! HELP HIM!” I am told he is having a seizure as his body starts to convulse and the nurse inserts a sucking tube into his mouth. I do not know how I end up laying on stretcher bed with him but he is now spooned agains my body so tight I just want to push him back into the safety of my womb; to protect him from the pain of this world he has suffered for so long. His body relax’s, “2 minutes” the nurse calls out.
My head is pounding, tears and sobs frantically escape me. Breath, I need to breath I tell myself. I am told they need to roll Aiden to his side to give him suppository medicine to hopefully stop the seizures. I am still on the bed with Aiden in my arms while this is done. “I love you Aiden, I’m here buddy, you are going to be ok, Mommy is here” I keep whispering into his ear. Finally he makes a sound, a cry out as they administer the medication and quickly insert an IV into his hand. He tries to fight the IV and I finally breath. There he is, there is my fighter Aiden. I can feel Aiden breathing, his body relaxed and eyes closed, the nurse gets a facecloth to wipe the vomit from his chin and clean him up a bit, we take off his soaking shirt and get a warm blanket for him. A nurse tells me I need to call Jay and hands me phone. Jay can’t get ahold of Josh but my brother is on the way to my house to watch the other two boys and he tells me he will go to his house. I tell him they have Aiden stable now and thank you through tears.
The concept of time now escapes me. Aiden’s face once again starts to vibrate, his eyes and mouth making movements that make no logical sense and almost seem impossible. I am sobbing and I hold his head in my hands and tears drip onto his cheeks. “I love you Aiden; Mommy is here; you are going to be ok” I whisper to him. The nurse once again holds the sucking tube into his mouth as he gags. I feel a comforting hand on my back and Jay is behind me comforting me as I am comforting Aiden. “2 Minutes” the nurse calls out again as Aidens body begins to settle. Jay tells me he dropped off clothes and shoes for me and he is going to Josh’s house now. Aiden’s mouth begins to twitch again. “Is he having another one? Is he going to lose brain function with them so close together?” I cry out. “1 minute” I hear “Have you called Cheo?!” At this point I realize they have no scans or equipment in Almonte and panic overtakes me. “Please call Cheo, we need to go to Cheo!” I echo frantically. The nurses have switched and they are turning Aiden to his side to give him more medication. I am told the doctor is trying to get ahold of Cheo on phone and to arrange transport but they need to get the seizure under control first. They do not want to move Aiden if he is unstable. The tall nurse tells me that doing work in an ambulance is like working on top of a running washing machine as she makes movement with her hands to emphasis the shaking.
This is not how it is suppose to happen, here surrounded by strangers with the cold hospital lights shining down on the plastic stretcher bed. I am full of tears and panic, praying to God to help, to anyone to help. Aiden still spooned beside me and the shaking starts once more but thankfully not as intense “1 Minute”. Just as his body stills again I look up from Aiden to see Josh, red eyed and tear soaked. The Doctor explains the situation to Aidens Dad as he holds Aidens small hand in his. Aiden has still not come-to. I do not know if he can even hear us but we tell him Mom and Dad are here. I am not sure what the nurses and doctor is doing now but finally Aiden stirs and groans. He is a fighter. Our small fiery conquer, Aiden Victor Paul.
There is a new nurse at Aidens head now. She is a sweet elderly lady who looks like the traditional grandmother; the kind who would bake pies and always have treats for grandkids. There is something comforting about her years. The first nurse is to the side writing notes getting us ready for transport. We are told that orange ambulance is on route and should be here around 10:15 am. The tall nurse asks us what life saving measures we are comfortable with. Sometimes orange will want to incubate the patient before leaving as it is very difficult during transport. Once again I am reminded of the washing machine analogy. Josh and I both look at each other. “I do not know” I whimper. The nurse tells us just to prepare. I have no idea how long we have been here or even what time it is. My head is pounding and at request I am given two Tylenol. I need to pee so bad but I don’t want to leave Aiden. I don’t want to move and as selfish as it is I don’t want Josh to move to where I am on the bed with Aiden, I want Aiden in my arms. His face twitches again and the elderly nurse gently holds his head with the sucking tube. She tries to assures us with comforting words I can not remember anymore. I hear Josh telling Aiden he is here, that we both are. As we both hold our oldest son and his body once again trembles. This time is not as intense but fills me with grief none-the-less. “1 minute” I hear as his body settles.
Aiden is once again soiled, I move off the stretcher to change him and I hear him groan, arms swatting and finally I see his eyes open and trying focus. The black pupil has returned to a normal size. We tell him he is in the hospital, he is ok and Mom and Dad are right here. I cover him with a warm blanket and change him with help from the tall nurse as he flairs in confusion and fear and a piercing yell. He is settling back down and I tell the nurse I am going to washroom and to change if she thinks he is ok for a minute. She smiles and says yes its ok. I breath. The air in the room is calmer now. I am overcome with exhaustion. I quickly pee and change my soaked summer PJ’s to jeans and a warm sweater. Listening for sounds from Aiden the whole time. Back in the room, I am once again laying beside Aiden holding him in my arms. He just looks like he is sleeping now. They said they gave him a lot of medication that would make him very relaxed and sleepy. Orange is finally here. Before a word is spoken I look up and say “I am going with him!” “yes of course thats fine” and I breath again.
The two paramedics move about swiftly and discuss with the nurse and doctor the situation. The one paramedic looks wise in experience with a friendly disposition, slightly greying hair and lean build. The other paramedic has the chilled jaw and tight tan skin that would land him a role on Greys Anatomy. Aiden is still “sleeping” and this is the longest time without seizure since this morning. I prey that was it. The Greys Anatomy paramedic tells us Aiden’s stats are stable and he looks good to transport with no need to incubate. Someone tells the paramedic that Aiden gets restless when not right beside me and the older paramedic tells me I can go on stretcher with Aiden if I think we will fit. “YES we will fit!” I immediately reply and a little chuckle escapes the room. There is movement in the room and the paramedic directs me to their stretcher and how to lay as the push it next to Aidens bed. One, Two, three and Aidens is moved beside me once again in my arms and I want nothing more then to push him back inside my body, to take this pain from him. We are wrapped in warm blankets and buckled in. Cords and machines disconnected and connected and monitors checked. “I have never seen this before” Grey’s says referring to me strapped to stretch with Aiden. Another chuckle escapes the room. Aiden is now semi awake and Josh is standing over us. He tells Aiden he is going to Cheo with me and he will meet us there. Does he want him to bring anything. “Itunes card” Aiden says and we all laugh. I ask for clothes for Aiden and for Josh to get soft blanket and iPad from my house and if Jay is still here. Josh goes to get him from the outside waiting room and I am assured he will follow down to hospital as well. Ok, we are ready, and out the automatic emergency doors onto the Orange ambulance we are loaded. Aiden is whimpering his hand hurts from the IV and Greys has a look once we are moving. Aiden is in and out of sleep and I whisper comfort into his ear. This is the first time I have ever been on a stretch in an ambulance and I am quite surprised how bumpy it really is, I am so thankful we did not have to incubate Aiden and pray the ride is quick and safe as exhaustion overtakes me and I fall off to sleep with Aiden. “5 minutes out” I hear as I become aware of my surrounding. Aiden still asleep and I ask Greys if everything is ok and he assures me he is doing ok and we are almost there.
I am in and out of sleep for the last 5 minutes of the ambulance ride and we finally arrive to Cheo. Stretcher unloaded from ambulance, Aiden still asleep tight against my body. The hall is all too familiar as we are pushed into the hospital corridor. I see another paramedic look at me and then look at Aiden and back to me as she comments to her partner “The mom is strapped with child I’v never seen that before.” I feel like I smile but I am numb to my body at this point and not sure.
After some discussion we are moved from the hall to the emergency room, Bed 1 – it is all too familiar. A ghostly remembrance of last September when Aidens shunt blocked – the lighting, the objects in the room vibrate with my memories as tears form again. I can’t do this anymore. I am unstrapped from Aiden and move out of way to allow doctor and nurse to maneuver. Unconnected and connected back up to beeping and humming machines. Josh enters the room and we stand on either side of the bed Aiden lay sleeping on. Once again I recite the morning events to the doctor as he examines. We are told Aiden has a fever now 39.9. I recall he was 37.6 before we left Almonte. His blood pressure is also very low and they start medication. And just like that we are chucked right back into emergency protocol. The hook his IV line up to a machine to give him medicine to help his blood pressure and Tylonol to try and bring his temperature down. Once again time escapes me until our palliative care doctor enters the room and everything freezes sitting in chair beside Aiden I break down in aching sobs. Her kind face expresses worry and sympathy and I know it is not good. She holds me as I sob onto her. I remember thinking how tiny her body is as I cry. “We just saw you yesterday! He looked good yesterday right?” I cry out for answers. Yes she assures me he did. There was no signs this was going to happen. “I ask if this is tumour growth, I ask if she has seen this pattern in medulloblastoma cases. I ask if this is the end; I am not ready; Dear God please not yet. The doctor tells me they are going to send Aiden for a scan to see, but yes she has seen this pattered before in cases like Aidens. Josh and I are both flushed with tears. I don’t even know what to say, I turn back to Aiden and hold his hand in mine. He looks so pale but so peaceful. I feel the heat radiating from his body. This is not how it was suppose to happen. There is a whirlwind of doctors and nurses and questions but I do not recall anything other then curling back up beside Aiden, head to head praying in my head to whoever will listen.
After some time, we are directed to the CT Scan. Down the white wash halls following the yellow ducky feet stickers to direct us towards imaging. A route we have taken far too many times. The bed is rolled right next to the hard CT scanner, and the nurse, technician and Josh work to get Aiden transferred. Aiden stirs and his eyes open with a look of confusion. I tell him he is ok, he is at Cheo and going for a quick scan. Panic starts to take him as he cries out and tries to fight whoever is closest. He looks to Josh, “I bet you are wondering why Mom and Dad are in the same room?!” He says to Aiden with a smile and Aiden smiles in return. The scan is quick and as the technician returns to room I see the look on his face that is the same look from 2016 when Aiden had his very first scan and our world was forever changed. We are returned back to the emergency room, to bed #1. The large room is so empty it gives me chills. I ask the nurse if there is a reason we have the whole room to ourself, fearful of the answer. He tries to assure me but it falls on deaf ears. Aidens blood pressure is still dropping and fever high. My mighty warrior with a smile that can light up a room lay peacefully sleeping. I just want him to wake up and give me a smile. The palliative doctor, Oncologist and someone else come in to the room and ask Josh and I to talk in private. I ask Jay to come sit with Aiden as Josh and I follow the doctors to the small glassed room. There is a box of Kleenex on the chair beside me separating Josh and I from siting next to each other. The team of three sitting across and the kind face palliative doctor begins to speak.
The scan shows that the seizure was indeed caused from cancer growth. There is so much mass on his right side of his brain that it has caused the left side to work in overdrive and spark into a seizure. It does not look like there was any haemorrhaging but with Aidens fever and low blood pressure it is not good. We are told Aidens body has been through so much that we need to talk about end of life care and what means of resuscitation and life support we want. They have put Aiden on antibiotics thinking that he could have developed a brain infection such as meningitis. The doctors would not know for sure unless they do a lumber puncture which is also very dangerous in the state Aiden is currently in. We will not know if the antibiotics are working for at least 10 hours. I do not know what to say. I do not know what they want me to say. I look over to Josh, to a look I will never forget. The sorrow in his eyes like it is the first time he realizes how sick Aiden actually is. The realization that we are not winning this battle with Cancer. My heart cracks into fragments knowing I will never put the pieces all back together. We are told that in these cases children most want to know they are not alone and their parents are with them and to give them comfort. The kind faced palliative doctor continues asking if we would want an incubation tube inserted into Aiden to help him breath if it come to it and also if we want them to try and restart Aidens heart if it comes to it. I ask if this is a actually a real possibility in the next 10 hours with the reply that numbs me. Yes. “Oh God why?” I sob as I roll wet Kleenex in my hand. After a minute I compose myself “Yes we want an incubation tube. No I do not want you pounding on Aidens little body. I look to Josh for approval, he gives a look I think means ok. I ask if Aidens brothers can come see him and I am told that would be a good idea. They also want to move Aiden up to ICU as soon as possible. There is silence in the room. I am too numb to even cry anymore. I ask if I can go back to Aiden now. Yes and I leave Josh and the doctors in the room and head to curl back up with Aiden on the tiny stretcher. Head to head I whisper to my sleeping Aiden that I am right there, I tell him I love him and it will be ok. He is a perfect little boy, so funny and smart, and so amazing in so many ways. I repeat over and over telling him I am there and time escapes me once more. Josh returns to the room and I ask him if he wants to call his parents to come up for support he tells me yes probably good idea.
A short while later, my friend Nina arrives with the two boys, she tells me Declan is pretty worried and I should explain to Declan what is happening. I say thank you and give her a warm hug trying to be more of a comfort to her then myself. Declan is on my lap now, I have pushed the tears deep down, the switch, not wanting to show fear or sadness and a smile forms on my face. I ask Declan how his day was. He talks about Pokemon cards and other normal everyday things in the life of a seven year old. Nothing about this situation is normal though. It is not normal for a family to be sitting around their oldest son laying so still on an emergency room bed. Lynkon on the hospital floor watching some YouTube show on a IPad. Finally I tell Declan that Aiden is really sick but we are all here together doing everything we can. The child life councillor from the hospital comes in. “Do you boys like lego? Are you hungry? I have a room full of toys, do you want to come see if there is anything you like? Declan pips up, curious but also cautious. Jays says he will go with him to check it out and takes Lynkon and Declan with the child life for food and what ever else. I am so thankful that in this situation they will hopefully still remember good feelings, playing with toys and just being together and it is almost like it is not that bad. The clock ticks and finally we are told to move up to ICU. Once again down the overly bright halls just steps behind our sleeping child on the stretcher. All too familiar. Up to ICU Josh and I follow and as we continue down the hall Josh says “not this room”. It is the same room Aiden was first in the September that now seems so long ago. Aiden gets moved beds once again and monitors unhooked and hooked back up. I honestly do not remember Aidens even stirring much but I’m sure he did. I am on autopilot. And I am in bed with him in my arms again. The rest of the evening is a foggy memory. Nurses come and go, Delcan and Lynkon playing lego on a gymnasium mat beside Aidens bed. “Jay play lego with us” Delcan asks. Joshes parents come and Jay and I leave the room to give them time with Josh and Aiden. Returning Declan begs to spend the night at hospital with me, I say not tonight but I will see you tomorrow, I promise. Joshes parents take them back to Almonte. Jay insures I am ok and he also has back home. Josh has a Ronald McDonalds parent room that is just off the ICU floor, close by if anything happens. The light turns off and I hold Aiden next to my body and pray not tonight, I am not ready and exhaustion takes over. I do not wake all night even though I am sure the nurses have come in numerous times to do their exams throughout the night. Am I just use to this by now?
The sun creeps in though the large window, I have no idea what time it is but I know it is early. Aiden is still peacefully sleeping next to me. I get a text, its 5am. “everything ok” Jay asks. “Yes, just waking up” I reply as I drift back asleep.
I wake an hour later, It’s Fathers Day. Aiden stirs and sits up bright as day with a smile! I am in complete disbelieve. I get him changed and he gets into the blue hospital chair to sit up and a nurse brings him a canvas and paint for him to paint a fathers day picture. Is this real? But it feels so good and so real and so normal the previous day almost seems non existent. I am smiling and joking and smothering Aiden with kisses, my early bird. I ask him if he remembers anything from the day before and he says no. All I say is that he really scared us! He had a seizure which is when your body shakes and a virus which is kinda like very very bad cold but he is at Cheo and the doctors are helping him. I hug him tight in my arms smothering kisses on his smooth bald head.
Josh comes to the room, Aiden is working on his art not wanting Josh to see it before it is done. Josh’s eyes gleam over with shock and tears and pure relief. “Im finished” Aiden says and gives Josh his fathers day gift. It truly is unbelievable, I am in a dream state, unable to fully believe this is real but tears of joy stream down my face. How can tears have so many emotions in 24 hours?
We all sit and chat and joke and just be together. The doctor, palliative care, and oncologist make their rounds finally, all in disbelief. Aiden has once again made it past all odds working against him. We are told there is still concern but the fact Aiden has improved so fast is remarkable. They are still concerns with meningitis but need to figure out what the best options are. His blood pressure is much better and they want to wean him off the medicine and monitor. We will be in for the week but we can breath. The next week is normal hospital routine, I can not recall specific details. We are put on isolation but occupy ourself with Netflix and naps, coffee and video games. There are ups and any many downs but Aiden is still here and that’s all that matters right now. Finally we are told we can leave given extensive instruction on what to do if he has another seizure and there is a new medicine to add to the ever growing list two times a day. We are told he may have another seizure but the hopes it that is it not as severe and traumatic with this medicine. I pack Aiden in our caravan, “I am so happy to be out of there!” he tells me with a huge smile!. Me to buddy, me too. And like a dream we drive back to our home in Almonte and return to normal routines and patterns. Aiden goes to my uncles 70th birthday that Saturday, one week after, he gets up on stage at school and sings at the talent show even though he had not really been to class in two weeks, he goes on his end of year class trip and gets to watch Fireworks for another Canada Day. I keep reminding myself that it is the good times we live for and as long as the good moments outweigh the needle pokes, nausea and body aches we will continue on in our “normal” but so not normal life.
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.
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Stephanie (aka MamaOutpost)