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24 hours

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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.

Creamy Chicken Enchiladas

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Creamy Chicken Enchiladas

I’m always on the hunt for simple, last minute dinner ideas for my picky eaters, and these delicious, oven baked enchiladas are so effortless to throw together on busy weeknights thanks to rotisserie chicken and ingredients you probably already have at home Recipe Type: DinnerPrep time: 10 minsCook time: 20 minsTotal time: 30 mins 

INGREDIENTS

  • 8 flour tortillas (soft taco size)
  • 3 cups shredded chicken (I use the two breasts from Rotisserie)
  • 2 cups shredded monterey jack cheese (or pepper jack)
  • 1/4 cup diced red onion
  • 3 Tbs softened cream cheese
  • 1 Tbs butter
  • 1 Cup of chicken broth
  • 3/4 cup sour cream
  • 1 (4oz) can of  green enchiladas sauce 

INSTRUCTIONS

  1. Preheat oven to 350 degrees and grease a 9×13 baking dish.
  2. In a medium size bowl, mix the shredded chicken with 1 cup graded cheese and diced onions.
  3. In a sauce pan over medium heat, melt the butter and then stir in the enchilada sauce. Add the chicken broth and cream cheese whisk until smooth and warm.
  4. Pour a small amount of sauce in bottom of baking dish to cover. Pour remain sauce in the chicken mix and stir until everything is evenly mixed.
  5. Evenly stuff the mixture into your flour tortillas, and place them into your prepared pan, seam down. Add remaining cheese to cover top.
  6. Bake for 22-25 minutes and then switch the broiler on for a few minutes to brown the cheese.

    Serve with sour cream and salsa. Great side idea is garden salad!

Being Thankful

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Holidays and celebrations have taken on a whole new meaning for me since Aidens diagnosis. Every holiday is a refection of where we were the previous years and a gratefulness for more time. October 2016, Aiden had just gotten out of surgery, unable to walk or talk.  I think back to this time and it still does not seem real, like a bad dream I am still trying to wake up from. But then I think about how far he has come and try to focus on that.  I see him laughing and talking and playing. Yes we struggle through the daily battles of chemicals, vomiting and feeding issues but at the end of the day I still have him to kiss good night and see a smile on his face more often than not.

One challenge is to not compare the old Aiden to now, it is hard at times when I see other kids running and Aiden just not keeping up or getting tired quickly but I also see his determination and I think sometimes it is just a reflection of my own insecurity as well. I have to explain that his brain is just not the same as it use to be. I remember reading an article in college about the media and how it is used to desensitize, if you see something enough, like war, you will not have the same emotions reaction.  That is what it is like with a child with cancer.

I actually found it harder coming home and trying to adapt to the life that continued on when we were away. I have talked to many other parents who say they feel the same way, which is nice to know  I am not just losing my mind.  I have become lost in this world that is so removed. It is actually hard for me to socialize and sympathize with everyday “normal” life sometimes.  I have to say though, I appreciate every message, greeting in town, and random croissant that always seems to come at the most appropriate times.

People perceive me as a positive person. I have been told I am glowing on more then one occasion through this and I try to be. I always try to find that shinning light, find some meaning in this all. I reflect on how I have grown as a person over these last two years and that is something that I am truly grateful for. I can honestly look in the mirror and say I truly love 98% of myself for maybe one of the first times in my life. I have battled with anxiety and depression for a major part of my life.  I remember going to my doctor before Aiden got sick and saying I just have this pit in my throat that feels like I am going to vomit… all the time. It had gotten to the point where it was a challenge to even do simply everyday tasks. My doctor told me this was called anxiety and gave it a word for the first time in my life. She also prescribed me medication. The medication helped but I also felt like it left me with less emotion or at least a stable emotional level.

When Aiden was first diagnosed I felt like I was cheating my feelings.  I felt I needed to feel extreme sadness because of all the pain Aiden was in; I too needed to bear pain. I decided to go off the anxiety medication that I had been on for over a year. Off to Boston we went and I watched Aiden go through horrible procedures and held him close as he screamed and I stayed strong for him. I wore a battlefield mask, showing no fear. I held tight control of my emotions. One to not scare him that something was wrong and two to give comfort that everything was going to be ok. I could have fallen apart. I could have fled (not going to lie my browser history shows a lot of remote vacations during this time). I could have let the darkness creep in but instead I became more self aware of my emotions. I started trying to better myself.

In the hospital room I would do my makeup and blow-dry my hair everyday. I went to the gym. I ordered food that I had never ate before from a weird app I had never used before. I also knew that if I was a sobbing mess or angry or just overly emotional that I would not be able to make decision properly and would not be taken serious from medical professionals. When Aiden relapsed in December I went to my doctor and said, “I need something to make me not cry all day” and I went on anti depressants for the first time in my life. I actually laughed cause I got prescribed Pristiq with my doctor saying “It is much better for libido them Cipralex“. My son was dying and I was newly separated from my husband but my doctor was worried about my libido? Ok sure!

Once again I felt like I was cheating. I talked to one psychologist and she tired to sell me with “If you broke your arm you would need a cast, it is the same thing”. How would I know when I was better though?  I was a huge gamer growing up (specifically the sims) and I had one friend tell me it was like a cheat code to make it easier…. my reply… once you get the cheat code though it ruins the game! After three months I was able to go back off medication and be at a good place mentally but is constant self awareness checking and a huge challenge at times.

I was so thankful for going back to work last year, to being successful, to learning how to adapt again and I felt I made a difference. In March, Aiden was so ill at school that I was taking more time off to go care for him then I was making and I had to take a leave for “Parents of Critical Ill”. I look back now and know I should have gone off sooner, my head was not right but I had tasted this “normal” life and tried to hold on.  I am so thankful to our amazing community and my friends for the support we received so I could go off work. I was counting down based on doctors recommendations and insight. BUT then summer came and everything the doctors told us seemed so unreal.

I am so thankful for the time I have had off, for the summer with Aiden and my other 2 boys that I missed the year before as we were in hospitals and miles away. Prior to everything, Aiden and I would always sneak to grandpas in the morning for fishing in the summer. This year, all summer Aiden did not go on the dock or even care about fishing, almost fearful I thought, but then one morning as summer drew to an end he woke up at 6am “ready to go fishing with Grandpa!”. He got mad as I suggested waking his brothers. He said, I am not afraid anymore. (I was terrified). He walked by himself down to Grandpas camp at 7 am and just like old times, the two of them went out fishing. The whole time I was worried, would Aiden flip out, get hurt etc. but he came back and they both had an amazing time. I will be thankful for this memory for the rest of my life as I am sure my Dad will be too. Two years ago he could not even lift his head from a pillow and now he was walking around the campground by himself. There was so many moments like this throughout the summer. This experience has taught me how to appreciate even the smallest of moment. It was just fishing with grandpa but it was SO much more!

Prior to diagnosis I was so afraid of what other thought of me, so afraid to hurt someone’s feeling and just caring more about the happiness of those around me rather than myself. I still feel this way but not to the same extent. Since Aidens initial treatment I have learned how precious life is and how important it is to make my own happiness a priority as well. I also took priority in showing my kids what happy healthy relationships look like. I have purged so much material goods from my life. Through Aiden’s Cancer I learned I do not need the outfit I will never fit back into, it just set an unrealistic expectation of what I should look like. Having lived in one room for a year I realized how little one needs to be happy. There was not one thing that I missed from my house that did not fit into my suitcase when we were away. I look back and see how neurotic I was when we first came home. Donating two truckloads of “stuff” to goodwill. I have reflected on the tornado in Dunrobin and the families that in one sweep lost it all. What do you think that are wishing for right now? It is not the 4 walls of a house but the home they built with memories! I do not need this shopping channel item that will change my life when a simple knife and fork would do. On more then one occasion at the hospital I did not have brush and used a plastic fork to comb my hair and you know what… it worked.

I am not perfect and I falter many many times, but I have that drive in me now to just try to be a better person. A personI am proud of everyday. I know in the end I can say without a doubt that I did everything I could have for Aiden. I reflect back on the summer and Aiden running around our trailer park and suntanning on the beach. I reflect that he get’s up and gets dressed everyday for school whether he is there for half the day or 10 minutes. I try to push the sadness that he can’t do a full day away. I am also so thankful that Declan is have such a better school year, more settled with routine and confidence in himself. I lost count how many time he got suspended in kindergarten last year. Last week with tears in my eyes I thanked his old teacher who never gave up on him. One meeting she said I am so glad you blog so I have a better understanding of what he is going through. I use to get sad when Aiden talked about the future but I have now learned that you always need to have dreams, goals and hopes, do not give up!

It is hard being so vulnerable in the honesty of my writing. I want to sugar coat it and just post the happy photos of us at concerts and hockey games and wish trips. I feel guilty at times, thinking people see us having “all this fun”. Then I realize, in all of these times, I wish they were for any other reason! I wish I would have just lived life to the fullest and created these memories not because I thought it is our last chance. Why did I need an excuse to go on a road trip and see Ontario for the first time in my life. To cried at the beauty of something so much larger than the isolation room we lived in for so long. Why did I rush for Aiden to experience his first concert, or to feel the adrenaline of sledding down a hill in the winter with friends or to go ice fishing, or in a combine, or hockey game, or Disneyland or throw a huge birthday, all these thing I have not even done myself growing up! It should not take facing death to live life and experience its full beauty.

I have had a difficult time writing lately, it was so much easier when I was away in Boston and Toronto. I want this to be a happy-ever-after story and maybe it will be. Last week I sat in clinic and heard the bell ring, I felt the families joy like I had, the hope. But the I saw a 8 year old child cry cause he has not rang the bell yet.  Aiden rang his bell in Boston and then relapsed in December. Most Leukaemia patients will never ring the bell because treatment never stops for YEARS! I sat in clinic waiting for blood result and I  struck a conversation with another oncology father. I went to the back room and chatted with palliative care, coming out the two doctors then went to this father, asking if he would like a tour of the Rogers House. I could not help but stare. I was watching myself in his face when I first got asked to be followed by palliative care the first time. I gave that Dad my contact info if he wanted to chat anytime. Palliative care? For me it meant end of life. I was not ready to admit that. I asked over and over, “Are we really there?”. I asked myself is this giving up hope? Then I learned Palliative care means to give comfort. It was hard but really was a great choice and they just offer so many more services and expertise then standard oncologist.

I am so thankful for the other parents I have met and the strangers that message me thanking me for posting our voyage. That is the reason I started this blog. If I could help one person or family know they are not alone in their feelings, this would all mean something. I do not want those sad looks of how are you doing. I want to write this so people examine their life, so they don’t hold grudges, so they do something that is out of comfort zones, so you go out and make a crazy lasting memory. For those with sick children just do the best you can and accept that this is the hand of life you have been dealt; Yes it is shitty, you can either fold or make it as beautiful as you can. This is your Life and it is a story to make worth reading.

This is Cancer!

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This is Childhood Cancer! Aiden has been feeling pretty yucky since Mondays LP and MRI. He also received a new chemotherapy into his spine that he would get once a month. Although he has short burst of energy, overall he is pretty fatigued and complaining of headaches. These symptoms can be a mix of things, shunt blockage, side effect from LP, or cancer growth. All these worries float around in my head, consuming. Even though we had appointment booked for 12:30 today to go over MRI results I called in to see if we could do blood work to rule out counts just being low. “If you can get here by 10:30 we can do blood work and transfusion” I look at clock… 10:00am I’m in Carleton Place…. “I will be there!” . Aiden sleeps the whole way to @cheohospital and I carry him in and lay him on bench seat. Because this was unexpected blood work we did not put Elma patch on to freeze getting called back for blood work Aiden starts to panic, by the time we get to room (me still carrying him) he is in full on panic mode and second nurse is called in to help. I hold him in my lap telling him it’s ok. He fights with every ounce, crying and firing out words that cut me like a knife. The nurse tries to draw blood but Aiden moves, blood pools on the tube prick. The nurse gives me doe eyes of pity… “what should we do?” Yes just do it I say as my throat tightens . I hold Aiden tighter and tell him to look at me and count to 10…. 1, 2,3…… the needle is in and blood is drawn. I memorize Aidens face as tears pour down his checks and he fires words of hatred. I tell him we will go to gift shop as we wait for blood results and he says ok, I carry him back to the waiting room. Set him down on the bench, “I’m going to go get a chair and your shoes” I go to walk out and I see Molly the Clown sitting in the other section of the waiting room. She asks about Aiden I say he is just around the corner with relief as she rises to go see him! I go down the hall and out to get Aidens shoes, returning and still no chair at front. When I get back to MDU and peak around corner, Aiden is joking with Molly and a smile on his face as they craft some master plans of trouble. I sit on the seat just out of Aidens view. Child Life goes over to chat with them and at one point I think he has 4women chatting and laughing around him. After some time I go back over, the anger and panic in Aidens face completely gone and I breath a sigh of relief. We all joke around for a bit until our caseworker comes and tells us Dr. J is ready… “Should I bring Aiden?” I cautiously ask. Our very sweet caseworker, V, smiles and says yes it’s ok. A sigh of relief. Back to another room we go we sit and I chat with V. We have been in this for so long it’s like a friend catching up in a weird way. Aiden plays with night turquoise play dough he got from the treasure box in the waiting room. Aiden gives V a small chunk and we joke that he is cheep with the play dough he gives up some more and asks her to make a bird. She lights up “I love birds! I have them at home!” We laugh “I hate birds and their birdie eyes!” I say Aiden laughs at me knowing this is true. Dr. J comes in….. “The scans are GREAT!” She nonchalantly states as she pulls up the report. What? Wait, what?! I don’t believe it. “Is that what the report actually says, just great in bold letters” I ask. V giggles and Dr. J smiles. Well not exactly but yes. I ask to see the scans. I ask what about the spots on his spine… gone… now I really don’t believe. What about the other spots on his brain. How can this be? Are you sure I think I ask 5 times. There is one spot that was measurable. It was the large tumour that could not fully be resected last scan was 6.4mm and this scan 5mm and nothing else could be measurable. Usually I don’t look to close at the scans I find they hard to make anything out but I examine each slide with Dr. J. I go over the complex wording on the report “what does “tiny blooming focus in the left middle temporal gurus likely represents a small cavernoma, unchanged” mean?” It’s shadow where the resection was she replies. So next question… so now what? In December they told us there was nothing and gave us 3 months to a year not you are saying the chemo is working? “Yes it seems to be” “So if all spots disappear can he go off it?” “No most likely not, he would stay on it till it stopped working” my mind races “we would reassess after a year which would be April.” Ok I say at a loss, and what about the other LP chemo he got Monday should he still do that if this is working? He has been so tired with headaches, not sure if it’s chemo side effect or shunt blocked, not sure these side effects are worth it?”. We discuss this a bit and it seems to make sense to do one more round then have a scan and see if there is significant change. I am told it has had positive results in other solid brain tumours. In my head I think that we need to try something to find a cure this indefinite timeline of chemo sits heavy on my heart. Aiden is ready to leave he is looking pretty tired again but dose remember the little toy promised and wants to go to store. I ask if we could go to Toys r Us instead of gift shop, he smiles “Yes much better then the gift shop” with a smile and I push him out of the hospital in the wheelchair. The sun is beaming and the warms touches our skin it really is a beautiful day. I help him into the seat and go out to the parking gate. I forgot to call and reload my Candlelighters parking card and have to call security and tell them they buzz me out. I look in my rear view mirror and Aiden is already fast asleep. I am very concerned the last time he was this tired his shunt was blocked. I call my Dad, he has the same feeling of disbelief, he was at Sick Kids in December and saw the scans when Aiden relapsed there was many many spots. I feel awful cause I know I should feel complete joy with the scan but I’m just filled with anxiety. I get to Stittsville and Aiden is still sleeping, I am not sure if I should wake him to go to Toy store or not. I know if I don’t wake him and we go home he will most likely blow so Against my better judgment I pull into the Toys r Us parking lots and whisper to Aiden to wake up we are here. He mumbles sleepy, “I have just been waiting” I ask if he is sure he wants to do this today and he says yes and sluggishly opens the van door. I help him out and he go into store. I feel like we should just turn around but he is determined we look at a couple things, bayblades, garbage gang, flush force and I can see he is fading fast. I suggest we go and come back when he is feeling better. “Can you just carry me, I want to just look” I lift him up and my heart is heavy along with the 25.4 kg. I tell him we will look at front display once more then go. He see the mini Hachimal eggs and chooses. Thank god! Up to the cash I go him in my arms and the package in his hands. I set him on the counter and he puts the hachimal package down. The lady goes to ring in through and Aiden jumps off counter and yellow formula spews from his body. I quickly ask the cashier if she has a bucket, a garbage can. She looks stunned for a moment then grabs the garbage can from under the counter. I hold Aiden up as he continues to repel everything in his body. I apologize, “sorry, he is on chemo?” Not sure what else to say or why I am apologizing really. The ladies are so nice and quickly a box of Kleenex is handed to me and another lady brings Aiden a water. He continues to heave into the garbage for another minute I hold him up and keep wiping his mouth and the creamy formula that drips from his nose. Aiden stops vomiting just as another clerk shows up with yellow mop bucket, sorry, I apologize once more. I thank them and tell the cashier we are good now and she rings through our 6.99 purchase of two Hachimal surprise eggs. I thank the ladies again and we walk out of the store. Within seconds of getting back into car Aiden is once again f
ast asleep. We arrive at my house in Almonte and I wake him up and half carry him in. He asks me to help him on the stairs and goes straight to his room to use his Hachimal cracker tree thing. It makes me laugh his little Hachimal display above his bed. I sit with him as he opens a whale and tiger or something that resembles them. We then go to my room and “the big bed” and climbs onto me and fast asleep. Now I am really filling with anxiety not over the scan but this extreme fatigue. I text my friend who suggest that I just go in to emerg for peace of mind. Not only had I just left chemo but I will feel bad if it is nothing and I just waisted everyone’s time. I call caseworker and tell her Aiden is still sleeping. She agrees even for peace of mind to go in it could be LP or could be shunt. So I lift Aiden up in a cradle position and down the 37 stairs I go and carry him outside back into my van. Onto the road we go back to Cheo at 3:30 and after I lift him from bed to CT scan back to bed and bed to X-ray and back to bed, Aiden sleep peacefully sleeps and I sit at 8:30pm waiting for results if blockage or not…. This is cancer just when you think you can breath something else seems to happen! It is constantly consuming in every aspect of life!

Taking a Pause….

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“The strongest people I have met have not been given a easier life. They’ve learned to create strength and happiness in the darkest of places”

Today was a day of pausing to appreciate the steps it takes sometimes; today was a day of accomplishments. I have always been a strong believer that it is after the hardest hurdles comes the greatest rewards. I believe that people give up too easy in this world. People cave to negative talk around them and that is when weakness sneaks in. To have faith and believe in those you love and in yourself is one one the most important characteristics one can have and today proved it.
September 2016, Aiden woke up from brain surgery unable to walk, talk or swallow. His voice trapped inside his body unable to break free. I was in complete devastation when Aiden woke from surgery with posterior fossa syndrome and cerebellar mutism. Everyday I would ask the neurosurgeon when he would talk again. To be honest, this paralyzed state was more devestating to me then the diagnosis of cancer. Many times I would yell out to god or whoever was listening “WHY COULD YOU NOT JUST GIVE HIM CANCER!”. I felt like he had already been stolen from me. I would look at the other cancer families and they could chat together or the child could tell the mother what was wrong, they could go for a walk when energy was up or have a meal together. I looked onto my child in the overside hospital bed for hours, days, as he just lay there, the doctors and nurses would come in and do procedures. For weeks I sat with Aiden in a hospital room without a single sound. I got so annoyed with my own voice trying to make-up for the silence I can only imagine what Aiden was thinking in his head. (I think that is why I can not help but talk in silence now more so then ever before.) I have asked him what it was like during this time and he explains “I was talking but I couldn’t get it out”. I spent endless hours researching mutism, I learned about ataxia, stroke victim, music therapy in the UK, I downloaded every app I could find, I yelled at staff that I felt like they have already put my child on palliative care! I knew nothing about therapies but I knew there had to be more! There had to be something to get him walking and talking again.
One of the first questions they asked when we went to Spaulding Rehabilitation Hospital in Boston was what our main goal was, instant response, “To talk again!”. For 6 weeks, everyday Aiden would get lifted out of his bed, transferred onto a stretcher and we would ride in ambulance to MGH. Aiden would be sedated for Proton Radiation and when he woke he would then be transported back to the Rehabilitation hospital for therapies. Half the time he was so tired but everyday he tried, even if it was to just get to the therapy room. When we could we tried to work the schedule so he could have speech and physio first thing in the morning before radiation. We tried a lot of things…. really, looking back this time was a blur. It was blindly stepping one foot infront of the other, not giving chance to stop or look back because if I did I may never get back up again.
At first sounds came like moans, nothing recognizable. I was told to try and follow his eyes to see what he may be needing but I found this hard. I was taught about non verbal communication, I know a lot of people do function like that but  I was not settling for that for my 7 year old; He was going to talk again! I remember getting so frustrated saying to the speech therapist one day, “Let’s move past this non verbal crap already!”. When we left Boston Aiden could stand assisted and was starting to use a walker but still no real words. We got home days before Christmas and I remember Aiden was on the stairs and said “Mom” for the first time in 3 months!  I remember paying to take him to a third party Speech therapist in Ottawa, she had a flip book of pictures “Monkey” “Book” “Car”, like teaching a one year old to talk.  Everyday we went to therapies, Physio, Speech and Occupational. I called all over to find places closer to home, had assessments set up,  or we would make up our own sessions, like taking Aiden to the little strip mall in town to practice walking. I had just sat in a state the art Rehab Hospital for 2 months I must have learned something!

Our home visit was short lived and end of February off to Toronto we went to start chemotherapy and more rehabilitation. The good thing about being in the hospital is that we would get the therapies everyday. When we were discharged to the RMHT it was far and few between maybe getting 1 session a week and sometime missing it because Aiden was just too sick from the Chemotherapy or just pissed off at the world and non-cooperative. March 13th, 2017 was the turning point. SickKids gave Aiden a sleep aid called Zopiden and everything changed from there. It was like this little drug, that the doctors had no clue why it worked in mutisim patients, had just fired up the cylinders, reconnected the wires that had been broken. He formed his first legible sentence! I will never forget this day for as long as I live to have a conversation with my boy after so long in silence. It was like getting a sip of water after being lost in the desert for so long. Aiden ended his Chemotherapy July 2017 and did another stay at Bloorview Rehabilitation hospital in Toronto finally returning home in September. He was able to walk with a walker or holding a hand, he also had a wheelchair for safety and for getting around and long distances. If you have seen Aiden walk it is kinda a baby deer, he has scared me many a times but I must say has never really fallen from lost balance. His speech was legible and we joked that if he lived in a southern state he would fit right in with the southern drawl. Aiden started back at school just after Thanksgiving holidays in October. This was a huge transition, Aiden would sleep hours on end, he would have outburst of frustration as he tried to do something that use to be so easy. The school set up meetings to get Aiden equipment he needed, therapies were set up in the school, nursing to come in at lunch to do G-Tube feeds. I would get a call to come pick Aiden up due to vomiting or fatigue more often then not in the week and thank god I have the most amazing friend NINA to help during these time.
Even though this transition back home was very difficult on many many levels at least we were home, we were rebuilding this new, very different, life. After everything, I could start to see through the storm clouds again. No words can give meaning to what I felt after hearing Aiden relapsed in December. After everything he had worked so hard to overcome the world just seemed so cruel and unjust. And I could have thrown up my hands to the air right then and there but on that drive home from Toronto in December I said to my Dad, “At least I have my Aiden this time!”. I guess someone did hear my cry! Aiden started back on Chemotherapy and we have rode the ups and downs these last couple months which makes me appreciate days like today even more.

Graduation

Celebrating Declan’s Kindergarden Graduation Together!


Today was a day to be grateful for what we do have, and not worry about what may come! Today I could not be more thankful for all the support we have had around us. To all the therapists who got yelled at and came back. To SickKids for thinking outside the box. Thankful to the school that set up endless meetings to help both the Boys. To Aiden for being such a strong willed Firrier conquer! I have a boy who for the most part is loving life at this moment. Who is getting on stage and singing songs, who is climbing monkey bars, and eating smores!
This voyage has taught me to stand up for what I believe, for myself, and for others.  I will never be able to look back and say it was not for lack of trying. I have faltered, I am not this strong person people see all the time, but this voyage has taught me that even though we may fall we must always get back up again. It has taught me that you do not always see things or appreciate things when they are happening but when you pause and step back you can see how things come together. Nothing in this life is instant  or easy and if it was it would not be worth it. There is always a choice in life, even when both option do not seem better then the other. Our choice has been one foot in front of the other and when it seems we can not go on anymore we are so incredibly lucky that there has always been someone there to help us get past the next step.
This video of Aiden getting on stage at the school talent show today helps me see that we can get through the storm clouds once more. I could not be more incredibly proud of my Boys today!

 

"Finally a F#&%ing Break!"

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I really do not know why this post has taken so long, this last part of this voyage has been difficult to say the least and I have been having a very difficult time processing it all. I have tried to be positive but it just seemed since December it was bad news after bad news.  This last MRI I prepared myself for the worst. We had even talked about taking Aiden off the Chemo if it once again showed it was not working. Seeing the strain the chemo puts on his body has been so heartbreaking, every round just getting harder and harder to see him go through. I have been so focused on creating the best experiences for the boys and memories, living life to the fullest with the time we have. I look at it now and I see it has been a crutch for me to cope. If I just stay as busy as possible there is no time to process and grieve the relapse.  Cancer really creates an unreal world that my writing ability is just not at the level to properly portray.
IMG_8367Aiden went for his scan May 4th and we were fortunate enough to have a friend offer us their place in Florida for the following week. Why stress in the cold of Canadian spring when I could stress on a beach with warm sunshine? Off we flew, Declan, Aiden and myself (I’m pretty crazy but not crazy enough to take all three by myself, sorry Lynky)  It was so nice and relaxing, having sun on our skins after so long in hospitals and the long winter.  I did not want to leave, I liked this unreal life where it seemed our problems were so far away. As our glorious week in Florida was coming to an end I even emailed our case worker the day before our flight home to  ask for preliminary result. Why not live in this dream of beaches, sunshine and palm trees if this is the time we have left? Our case worker messaged back saying we could stay till Monday but Dr. J would like to do another round of Chemo. What this meant I really did not know. Was this good or bad news? The despair of hearing your child is terminal with an unknown timeline is unexplainable. My mind and heart has played tricks on me so many time as I have tried to navigate through this. Sitting on the flight home I even prayed that the plane would just go down. One clean sweep and this pain would be over.IMG_8810
I really had prepared for the worst. As I drove to CHEO Friday morning, a beautiful sunny day, I could not push the tears back down as I thought of everything Aiden has gone through. Trying to imagine how I was going to do this next part. Josh was taking Aiden to the hospital and we would meet up there to get the results at Aidens appointment.  I told myself that this was my moment to allow myself to cry, alone in my car. All these thoughts and more raced through my head as I drove down the busy highway, tears staining my cheeks. Through this all I have said I hate when people call me “strong” maybe because I really don’t believe it but at this moment I see it. I see the strength it takes to push down the tears and show no fear as I enter the parking lot at CHEO and to smile and laugh with Aiden like this is all just normal.
IMG_1050I enter the MDU unit and we do Aidens blood work, I see familiar faces and it is an evil homecoming and security at the same time. Finally, we are called back to the room. Concerned, I ask the nurse practitioner if Aiden should be here. Was the team of people going to come in like last time. You know it is bad news when they fill the room. I was assured not this time and DR J, our oncologist, would be in shortly. The nurse examines Aiden and we review concerns and questions. I had asked for hydration for Aiden so they get that hooked up. Aiden is pretty much passed out on the plastic hospital exam bed by this point as Dr. J finally comes in. Right to the point, Dr J tells us… “THE SCANS LOOKED GOOD!” What!?!?! Did I hear her correctly? She pulls up the images on the computer screen in the corner, saying there is no new growth and some areas are even slightly smaller with only one area that is questionable. Josh goes over the scans on the screen with the doctor, which I really have a hard time even distinguishing what is brain or shadow or “bad guys”. I really don’t even care what it looks like on the screen as long as the doctor says it looks good that’s good for me. I don’t even know how to respond really. I ask why, what is the difference now. Dr J, I think a little surprised herself, suggests the new chemo drug he started the last month. The one they never offered before because “too expensive” until I begged that there had to be something else. I try not to dwell on the what-ifs but it is very hard sometimes. The only other difference is higher dose of cannabis oil but I don’t think Dr would ever agree to that and not sure I really do at this point either. Either way I am in shock.
Dr J then mentions that The radiologists from Boston sent her an email this week asking for a blood sample from Aiden to do testing. I guess because he had such severe radiation burns and his hair fell out on etoposide which is unheard of the Boston doctor would like to fly to CHEO to  collect blood and bring it back to Boston. I immediately say yes not a problem, joking that if he wants to bring us to Boston that would be ok too! Any test that is non invasive and could possible help Aiden or others we have opted for so far. I still really believe there is a greater meaning or reason or purpose to all this whether to build awareness, educate, to help another child or parent or to aid in research. I need to believe in this or anger and bitterness and cancer will win. IMG_9330
The doctor leaves, I ask Josh if he would like a coffee. Aiden fast asleep at this point still hooked to hydration for the next hour. I head out of the room and see a door opened a crack in the exam room next to us; a beautiful Almonte mom playing with her daughter! I rush over to share the good news and tears roll down my checks as we hug! The Cancer ward really is a community onto its own. Being able to share these feelings with someone who totally gets it, the cheer and the pain that is unlike any other, has been a huge part of this voyage. With huge smiles and hugs we part ways and I head out the MDU unit shaking at this point. I pull my phone from my purse and call my Dad. He has been with me for the last 2 MRI results, “The scans were good Dad!” I cry into the phone. I believe the response was along the lines of “no fucking way your kidding” and I can hear his voice crack too. “Fuck yeah! Finally a god damn break!” excuse the language but it’s brutally honest. I am still shaking and tears pour from my eyes as I hang up the phone. I really do not know what I am doing at this point. I go get coffees at the cafeteria in my own little bubble of happiness, disbelieve, shock and relief and head back to Aiden, still fast asleep in the exam room. I give him a kiss and head out, it is Josh’s weekend with the boys so he stays with Aiden and waits for the hydration to go through and prescription renewal to start another round of chemo but at least this time there seems to be hope.
I look back now a week and a bit later and actually laugh at how out of it the news made me. I did not even ask about another MRI or another appointment or what this really means if anything. This last week I have cycled through thinking about it and not thinking about it. To open myself to hope again or not? I still don’t know if I truly believe the good news or not it is hard to feel and accept this happiness when I know it can be so easily taken. Everyday truly is a gift and not to be taken for granted.  Maybe it was the Florida sunshine,maybe a greater power, or maybe just seeing through different lenses now but Aiden seems to be doing much better too. We went to our trailer and he walked all around and even ate real food. He has been in school for the last week and his EA said he had a fantastic day. and he did not even nap! I have explained to him that his scans were good and the medicine is working.  I’m sure the next week when the chemo really takes effect and hits his body  will be a different story but as they say one day at a time and this really is the break we needed. Aidens next appointment is on the 8th where I can go over my list of questions but until then I guess we just live and continue on and love my “fiery little conqueror” with all my heart!
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