Stephanie's Development Site

Just another WordPress site

Following Hope

by

I would like to start this post just by saying how much we appreciate the love and support we have received on this stage of our voyage. We really have a crew behind us and it means the world knowing so many people care and are traveling this rough cancer sea along with us.

I sit here on the plastic coated parents chair, in a white sterile room of plastic gloves, and poles and monitors. Declan is laying on the floor watching a Minecraft YouTube video. I am too tired to tell him to play his Reading Eggs game. Aiden is laying on the stretcher bed in warm white blankets, staring drozzily at his iPad. He keeps telling me he is bored as I keep suggestion more activities. We can play Uno, I can read to you, they may have a board game I can ask, we can colour? All to which the same reply, No.

This is our first day officially enrolled in the SJDawn study at St. Judes Children’s Research Hospital in Memphis Tennessee. The day has consisted of an EKG at 7:00 am then blood draw then Aiden received his first dose of …… then another blood draw and 2 hours later another blood draw and another EKG then 2 more blood draws each 2 hours apart with last one 5:15pm. Finally our hospital day is done and we go back to our hotel style room and get ready to do it all over again tomorrow. I look back over the last couple weeks, over the last couple months and try to reflect on the events that got us to this truly amazing hospital and it just seems so surreal….

January 6, 2020, The first day back to school after Christmas holidays. Most kids are excited to see their friends again, show off their new outfits or gush about the lot of toys Santa dropped to their house. For us, we are preparing for MRI Day. The boys were at their Dads on the weekend and the appointment is not until 10:00 am so we decided Aidens Dad would drive him this time. I usually do but at this point I really just want the results. It is hard not being there but I also know I need this break. I send Josh multiple texts of questions I need him to ask.

“Get them to check his stomach cause he has been having bad cramps since the new G-Tube was placed.”

“Ask about St Judes, if they heard anything back yet. It’s been two months since they sent his tumour this is ridicules!”

“Make sure you ask when we will get the MRI result, and you want them back this week!”

“Make sure you tell them you want the scans sent to Sick Kids for second opinions ASAP and I am not waiting two months.”

Reading my texts over again, I can see how I may come across a little over bearing and maybe it was better for me to just go but I can’t imagine sitting there for the three hours as Aiden sleeps in the MRI machine. After the last week at Rogers House, I just need a little break from the hospital. Over the last couple years I have lost more and more faith in our health care system and have learned you need to be the advocate for your child. To follow your gut and push for the best possible care.

I get updates for Aidens Dad throughout the morning, Aiden is doing well and came out of sedated MRI no issues. Now the worst part….waiting. I get an email early Tuesday asking if we are available Wednesday to review the result. I know it is not good based on this fact alone. The faster you get the results back the worst it is. I also ask if Aiden should be there with the response that they can arrange for someone to sit with him while we review the results. Another sure sign this will not be good.

Wednesday morning comes and Aidens care team, Josh, Jay and I all squeeze into a small examine room. We are told what my broken heart already knew, there is significant growth. When I close my eyes I still see the screen with these three big masses making up what looks to be the majority of his head. It is the worst scan yet. Jay squeezes my hand a little tighter not saying a word as he is now all too familiar with scan result days and what I need. Once again we are told this is it and to take Aiden off chemo. I know it to be true but still in disbelief. I have lost so much trust in our home hospital in the last year. It is hard for me to absorb the news this time.

In the summer we were told the exact same thing, it was not working take hi off chemo but then to only a week later be told that it was working to go back on. I plead to our oncologist that there must be something. This is the pattern, you tell me my son is dying I say NO, not yet. I plead there must be something else to try and then we try something and it works for a year or so and then repeat. I ask if she sent the scans to Sick Kids for second opinion. I cry out in frustration. Why we have not heard back from St. Judes when Aidens tumour was sent months ago to be tested. I just really do not believe it. Months ago when we first heard there was an opening he was stable with minimal growth. I am so scared Aidens scans will be too bad now to even be considered for this trial. .I don’t even remember anyone else talking in the room although I am sure there is. I know Josh says something and gets up first and leaves. I keep drilling the oncologist. “How can I trust you this time when only 3 months ago you said the same thing and ended up being wrong!” I don’t know how the conversation ends but eventually Jay and me get up and leave. As I leave I make the team promise to follow up with St. Judes the next day and Sick Kids and anything else that is remotely possible. In the truck I cry onto Jays shoulder, shaken and unable to process the news we just received.

Back at home, Aiden is looking so good. I know they told me to stop the chemotherapy and that it is not working but I just can’t. That night I give him his regular dose, and the next morning. I feel like I am being sneaky somehow. I hate what the chemo does to Aidens body and I know they are telling me this to relieve as much discomfort as possible but every fibre of my body is telling me not to stop. I tell Jay the next night that I haven’t stop giving Aiden his chemo and he hugs me and tells me he understands and to follow my heart and intuition. I feel guilty but something inside of me is telling me not to stop. The next day Aiden is in great spirits again. We go swimming. The next day Aiden goes to school. How can this kid be dying? He looks better then I have seen him in MONTHS. I email our hospital caseworker and tell her I need another scan in a month and I need to keep him on this chemo protocol for just one more month to accept it. I need to hear back from St. Judes and I need an appointment Friday for Aiden to get assessed in clinic. I need them to look at Aiden and see how great he really is doing. They need to fight for him too!

I email Josh and tell him I have not stopped the chemo and ask him to please continue over the next couple days that he has the boys. I tell him I want just one more month on chemo. One huge mountain in cancer treatment we have climbed over the last 3 years that I have not discussed much is when two parents have VERY VERY different views on medical treatment. But he agrees and I am so grateful in relief. I also tell Josh that he should take Lynkon and Aiden swimming that Thursday. Aiden has pretty much laid in a bed for 2 months because he had been feeling so awful. But now he is eating and gaining weight and playing and is really just engaged in life! He needs to build his mussels and his strength back. Josh also agrees and Aiden goes swimming twice in the same week! and he is honestly happy! How can this kid be dying?

Friday is here and I take Aiden into his appointment. We meet with the Palitive team and the oncology team. They all agree. Yes this is the best they have seen Aiden in almost years! Again, he is engaged and sweet and his personality is shinning. I ask if it is normal progression to bounce back like this and told not usually. When kids have as much growth as Aiden it is usually a steady decline from there. I again express my fears that St. Judes will look at the last scan and he will be disqualified. I am worried that our oncologist will not recommend him anymore. I am told that based on how Aiden is looking today that she will endorse and push for him to be accepted to St. Judes still. I ask about the trial and told they do not know much but it is a phase two – meaning potentially curative. I am told they did hear back and needed to send a couple more items which where sent snail mail. FUCKING SNAIL MAIL! I can not believe in all the technology we have that the hospitals still send stuff via postage. I feel relief in knowing that St Judes is not off the table but anxiety grows as I know every day we wait is literally a matter of life or death. Aiden and I head back home hoping against all hope that the St. Jude’s trial comes through.

Finally, Wednesday, January 26th I am just sitting down for lunch at Jaks Dinner in Kanata. It is Declans 8th birthday on the 29th and I just finished picking up his gift. I feel good. I check my phone as I wait and see a email from our caseworker, “V”. “Call me, we have news on St. Judes.” my heart pulsates harder and I immediately dial her number. Voicemail. I email her back and try to phone again and then again. I look around the restaurant fighting back tears. My phone rings finally, “Aiden’s tumour passed the genetic testing and he is eligible for the trial at St Jude’s!” I am shaking and ask when do we go? I am told that they still do not know much details just that his tumour passed and he is accepted but it is usually pretty fast she would think. She tells me she just got off the phone with Josh and he is on board too. I thank ‘V” and the tears pour down my cheeks. I pack my food to go that just got delivered and shakily go to my van to call Jay, my brother, my dad, my list. I am still in shock and in fear that something will still go wrong but this is one more step closer.

Then the waiting… next day still nothing. Next day still nothing. I ask Virginia if this is normal. She tries to assure me not to worry they are probably getting their paperwork in order and she tell me she has been emailing them asking what the next steps are. I ask for their phone number directly and told that they do not usually give it out but to hold tight and keep carrying on like we have been. Earlier in the week, Aiden, Declan, Josh and I met at the Rogers House. We had decided that we wanted to talk to the boy together with professional help to talk about Aidens scan and just to determine where Aiden is at in his understanding. Declan has been through more then his share and we want to prepare him as well. The meeting is actually very interesting. The doctor asks Aiden if he wants to know about his last scan “No”.

Declan pips in Yes.

The doctor starts to explain that from the last scan it shows Aidens cancer is growing. Declan is cuddle up to Josh on one side of the L shaped couch and Aiden is next to me on the other side. My arm around him and tears slowly flowing in silence down my cheeks as the doctor talks. Aiden is so quite. Declan continues with questions.

Why can’t we zap it out – I say “we did that with radiation “

“Why can’t he fight it like ninjas” – I say “that is what we have been trying to do with the Chemo”

“Why can’t we just cut it out the bad guy” – I say ” Again, we tried that too.”

The excitement and joy that was once on Aiden’s face from the white chippits he had been eating earlier is replaced by an unreadable emotionless face. We decided that is enough for the day. And I follow the Palliative Doctor with the same name as me out of the room for a private conversation. “So what do you think? He does not seem to really want to know right?” She agrees and she agrees not to push him. Some kids don’t want to know, some kids want to know everything. We talk that we may still be going to St Judes but scared cause it is taking so long and just want to be prepared. I set up another appointment for the following week for one-on-one individual counselling for the boys and head back to the room. Aiden is back in full smiles as Josh had just promised to take them to a CHOCOLATE STORE!! Watch out white chocolate here he comes.

The boys are with Josh for his weekend again and Aiden is still feeling really good and happy and eating but everyday I just keep picturing Aidens tumour growing. We are going on week two since told Aiden is eligible. First thing Monday morning I call V and this time demand the number for myself. This is ridicules. This time V gives me the contact and tells me to reach out. “I may have better luck” she tells me. I hang up the phone and I dial the new number. No answer, I leave a voicemail. It is mid morning now and I am driving up March Road having just had a call from the school “Declan is having a very difficult time I think you need to come get him.” I try calling from the van Bluetooth on the way to the boys school. Ring Ring. I am amazed when I hear a women voice with a southern accent answer and greet me with “We are so glad you called! We have been trying to get a hold of you! Can you and Aiden come to Tennessee tomorrow to start?” YES! I pull over to the side of the road, I am vibrarting. I am so happy and in shock once again. We exchange a couple details and I tell her I will be home in 10 mins and can send her all the information and passports she needs. Every fibre in my body pulsates. I go the the school to get Declan at the principles office. I do not even know if I am making sense as all my words jumble from my mouth as I tell the school we are going to Memphis tomorrow and I am taking Declan with us. There are lots of hugs and congratulations and tears and Declan say bye to his class. I am actually shaky and in a daze.

I get home and instantly send photos of our passport to the email I was given. I write that Declan will be coming with us, what else will they need and what is the cost. Everything is really just a blur now. I remember Declan with a huge smile. He is so happy, I am so happy. I text Josh to tell him I am home now and to come inside when he drops off to talk. Not something that usually happens so I also tell him I heard back from St Judes. He will be here in 10. I call Jay and tell him what I can manage to get out, my mind is all over the place but we are just happy and have hope restored again. Aidens Dad comes in and I just blurt it out before he has a chance to take off his coat. “I just heard back from St. Judes. Everything is good to go and Aiden, Declan and I are leaving tomorrow”.

A look of shock and confusion overtakes Josh’s face.

“What is the trial,? What are the drugs they will use? You are taking Declan?”

I should remember after 10 years of being together that Josh’s processing and decision making speed is very different then mine. I don’t know what else to say though or how else to present all that has just unfolded over the last few hours.

Aiden is sitting on the couch looking at us. I sit beside him and wrap my arms around him. “We are going to Memphis Aiden, to one of the best possible hospitals in the world for Cancer to try one last time to fight this awful Cancer! ” His face lights up as Declan is dancing around the room. Josh sits down in the chair. I apologize for the abruptness but what did he think was going to happen once the hospitals got there stuff organized? He said it is just so fast. I laugh and say we have been waiting for two weeks let alone months since his tumour was sent! Again he says he does not know about the drugs or what this trial is to my response, “Does it matter? What are they giving us here? NOTHING! There is no waiting on this, there is no contemplating it it is decided.” As I replay this exchange over now I just see all the reasons we never lasted in our marriage. It is not for either of us being bad people we are just so very very different.

I give Josh all the contact info I have and tell him to email the coordinator for more infomation too. Josh hangs out with the boys a bit longer and we arrange that we will all meet at the airport together. Lynkon will stay with Josh and we will just take one step at a time once we get there and figure the rest of the details out.

The timing is actually perfect as that evening Jay has his girls for dinner so we decided to have a goodbye celebration. My brother and his wife and their girls come over too. We order pizza. Jay and the girls picked up a ice cream cake for Aiden which I steal and claim as a birthday cake for jays oldest “D” and Jay’s 40th, which in the next weeks and we are so sadly going to miss. It is a great night. We are happy and excited and the kids are playing. I am a mixed bag of emotions and fears but I feel so surrounded by love and family and that is what I am trying to stay focused on.

Finally it is time to say goodbye. I look at my brother and Christine and Jay and know we are thinking the same thing yet trying to hide it from the kids. This may be the last time we are all all together. My nieces expression will forever be embedded in my brain as she turns from hugging Aiden goodbye on the couch. How can smiles and laughter so quickly transform to such sadness and tears? My brother and his family leave and now it is even harder. Jay needs to get his girls back to their mothers house for bedtime and we are already in fear of running late. We all exchange hugs and so many tears. I thought it was hard last time leaving Lynkon and Declan. Now I am leaving 5! Declan and ‘R” are so very cute as they exchange hugs and I’ll miss you’s. They have really become two peas in a pod. “R” is strong though and I am wishing she would share some of her strength with us all right now. Her and D and L shower Aiden with hugs and well wishes and it just so very cute but very rushed. They head out to the truck heating up. I follow to the door and see D standing frozen on the front step. Again the look in her eyes, glistening full of tears. I give her the biggest hug and try for assurance. “I know this is hard D, but this is a good thing. This is what we have been waiting for, a chance to save Aiden.” She cries deeper into my stomach. ” I tell her we will be back before she knows it and to not be scared. I tell her to go give Aiden another hug and tell him how you feel that is what he needs to hear.” Cancer teaches you not to wait to say I love you or express how you feel because the moment may not be there later on. I feel like she to feels the fear that is not said out loud and she runs back to the living room. The oceans have been filled on less tears than have been shed tonight. A couple minutes later she returns to the door and hugs me again. I tell her to take care of her Dad while I am gone and she smiles. I tell her how much she means to us and give her one last hug before telling her OK YOU REALLY NEED TO GO NOW! We both laugh. I stay on the step watching them drive away and fully break down. All of my fears surface that the truth is this could very much be the last time we are ALL together.

I pull myself together and head back inside with cheer in my voice. “Ok boys let’s get ready for bed. Mom needs to still pack.” The boys all settle down in Jay and my bed. I put on a movie for them as I try to figure out what to pack. The boys all fall asleep together in our bed and 2 hours later Jay returns and we fall asleep in the kids bunk bed crying in each others arms.

Morning comes all too early. I get the boys ready and Jay packs the van. I text Josh saying we are leaving Almonte and to meet us at Airport. It is happening, I still can not fully believe it. Josh meets us at the airport and we take photos of us all together. This is hard. I am leaving Lynkon once again and Josh is leaving Aiden once again and now Declan too. I try not to think over the last 3 years too deeply in these moments. I force myself to think positive and hopeful and really do feel it in all of my soul that this is the right decision. Final hugs and Josh leaves. Lynkon is still with me as I hold onto every last moment I can with him. The boys and I go to check-in line. Jay has now returned and entertaining Declan and Lynkon who are running around the Airport. Seeing Lynkon running around I know there is now way I could take him with us. We are checked-in and Jay comes to tells me some man is here for me. I turn around and see Jays Dad! He is here to help see us off and my heart is filled with such love. I feel just so incredibly blessed to have this amazing partner, the girls and this new loving family. This cancer is fucking awful but it has taught me to fully embrace all the good that life also gives. We all hang out for as long as possible. More hugs and tears and kisses as Declan, Aiden and I go through the gates. One stop in New York and a couple naps and we have finally landed in Memphis.

The boys are tired but they have been amazing. We work our way through the airport and find the prearrange taxi waiting for us. It is hard to tell what the city actually looks like. It is dark and we are all too exhausted to even really care. We go through a security gate and arrive at St. Jude. I have been given all the instructions prior on what to do on arrival, how to register and that we need to go through a quick assessment before we can head to the housing they had set up. Again, the boys are amazing. We finally get to our room a little past one and all snuggle in for much need sleep.

Morning comes all too fast. Our appointment are not until late afternoon so we go for a walk to this pyramid we can see out our window. It is a huge bass pro shop which is pretty crazy inside. after only checking our a small section of toys and the fudge shop we head back over to the the hospital. I am just so incredibly thankful and hopeful that we are finally here. Our adrenaline is on high as everything is new and exciting. It really is a beautiful hospital. Aiden gets blood work done and then we are scheduled to meet the fellow working on the study. Aiden is still looking really great from the outside. It had taken so long to get here but I have not noticed any physical signs of tumour growth over the last couple weeks. Eating, laughing and being a pretty normal 10 year old. What more can I ask for really? We are now in the clinic. Declan has found Minecraft on the Xbox in the waiting room and is quite content waiting for us there. Our names are called and Aiden and I head back to exam room. A small pretty female doctor enters and introductions are made. The conversation start off pleasant but within minutes of review all of my hope was replaced with devastation……

January 6th to February 5th in Pictures

Ok this now brings us to February 5th but it is 2:43 am and I am tired…If anyone wants to spell check for me go ahead I will not be insulted! Will write more soon…

Just a Normal Saturday

by

The house is so quiet which causes me to feel uneasy. The calm gives room for my anxiety to grow but I also know I need this time to absorb all the events of the week. I need this time to freely sob and to just stay in bed and sleep and recharge as much as possible. Aiden has a MRI on Monday which will give a clear picture of how much growth there is and what the next steps will be. It really is just one step in front of the other at this point, to just keep swimming…..

Saturday morning I wake up and get ready to pick Declan up from his Dads and take him to hockey. I signed Declan up for recreation hockey for the first time this year thinking it would help him build confidence and friendships but mostly to give him a chance for one-on-one time with us and to have something that was special just for him. Having a sick child is like a vortex that sweeps your home. It is all consuming and impossible to stop. Most plans, decisions, catering and bending of house rules revolves around the complex care child and it is all too easy for the other siblings to get pushed aside in their needs and desires.

I have worked very hard to try to balance but it is impossible at times. This leaves us with an 8 year old that lashes out and falls through the cracks in emotional and educational development. I am so incredibly thankful for the boys school and the teachers for being so understanding and compassionate and also a huge thank you to Carp Tutoring that is offering educational support for Declan. It breaks my heart when he cries that he is so dumb and can’t read, as a grade two he is at a kindergarten reading level. With Aiden being sick, us travelling for treatment or appointments and just “Rest Days” he has missed A TON of school. I try to reenforce that it is not his fault that he can not read and that he is far from dumb. I tell him he is an amazing brother and although Aiden is the one with the cancer he has been through so much as well which makes him a very special boy. Cancer affects the whole family. Yes you look at Aiden and can see the physical signs of him having cancer but the toll this has had on the siblings, specifically Declan, is sometimes worst. Brothers who use to share a room together, spending endless hours in their bunks, chatting and playing games; this seems like a distance memory now. How do I explain to Declan, at 5 year old, why Mommy has just picked up and gone far away with Aiden? or at age 7, why older brother gets to stay home while he is sent to school? or now age 8, Why Aiden get to stay up late watching tv and sleep in Moms bed while he is sent to his room he now shares with his younger brother at 7:30pm for bed… Because he slept for 6 hours this afternoon and I want him beside me incase he has another seizure or he dies in the night? What is the right response? There is no encyclopaedia or teaching manual on this shit, this is not basic 101 parenting, this is advanced calculous when you think why would I ever need to know this shit?!

There was a time before Cancer, a very different life with very different hopes and dreams

Hockey ends up being cancelled but we go to my brothers up the road from rink in Pakenham to visit instead. Declan runs off with his cousin as Jay and I drink coffee and Vodkow Cream Liqueur with my brother and sister in law. My brother, Jeff and his wife Christine have been so incredibly supportive through this. When Aiden first got sick, Declan lived with Jeff and Christine for the first months, even switching school so he could take the school bus with his cousins from their house. This love and support they gave Declan through this incredibly hard time I can never thank them enough.

Jeff and Christine know scan day is on Monday. We do not talk about it, they know better. I think they know I just want a taste of normal. So we chit-chat about whatever and drink our specialty coffee. Jay gets roped into helping my brother move a freezer and it really does just feel normal. But MRI Monday lingers in my mind. The harder I try to fight it the more it grows and soon I feel my body overwhelmed with anxiety and panic. I tell Declan and Jay it is time to go. Declan is beaming from the morning together, very happy as we drive him back to his Dads and head home ourselves. Once inside I immediately head to our bathroom and take an Ativan. I shuffle through my bathroom drawer to find an old script of anti-depresent. I have three half bottles of different ones at this point. I can’t remember what my adverse reaction was for this one, excessive sweats, heart palpitation and bruising or maybe this was the one that made me feel like I had schizophrenia but at this point I don’t care. I need something to take this nauseating pain and panic away. I head down to the kitchen and do a shot of vodka. I need my body to still, vibrations are taking me over and I can’t let that happen. Jay knows better then to tell me no but I see the look of concern on his face. We eat a quick lunch and plan to go visit our friends for the afternoon. One more shot and my body relaxes enough to do one more shot and head out.

A short drive, just outside Almonte and I am with my bestie. She too knows not to ask and that I will talk about it when and if I want. Sometimes all I feel is the huge elephant in the room and I feel like when people see me, even strangers, all they see is this mom with the child with Cancer and it is a taboo subject to talk about; Or maybe I just make this up in my head because this is all I have known for the last 3 years. As we settle into my friends house with cocktails my body finally starts to feel normal. We laugh and chat. “We should play rummy later it has been so long”. and it is a normal afternoon with friends….

The phone rings, Josh name shows on the phone. I pick up….

“WHHHAHAHAHAH WHAHHAAAHHAH” and heart wrenching unrecognizable painful cry echoes through the phone.

WHATS WRONG?!?!? IS AIDEN OK! IS AIDEN OK!

WHHHAAHAHAHAHAAAA WHHAHAHAAAAAAAAAAA”

the cry floods me with panic as I Yell into phone “Call the ambulance” Call the ambulance”

OH GOD NO!! My heart pounds as I run to the door to get my shoes, Jay close behind. Again another piercing cry through the phone as I continue to yell. “Call the ambulance, I am on my way!” I picture Aiden just like the morning I found him from the seizure, almost lifeless and cold. My hand is on the door knob just as Josh’s voice sounds through clear as day. “That was Aiden!” He says to me almost in anger.

I am so confused.

What is happening?

“Is Aiden ok? I though that was you crying” Yes, Josh reply’s as he explains Aiden is mad cause he does not want to clean his room so he called me for Aiden to talk to. I am speechless. I am shaking. Then the grief transforms to anger and spews venom from my mouth. “WHAT THE FUCK! I thought you were calling crying cause he was dead you fucking asshole! Why would you do that! Why would you not give me a heads up first! FUCK FUCK FUCK! I scream into the phone through sobbing cries and hang up the phone.

My friends and Jay look at me in shock. I can still hear the unrecognizable crying ringing in my ears. My phone dings with a text we banter back and forth. I ask if Aiden wants picked up to the response “It’s my time with them. I’ll just parent without you. I thought you would actually help” I ignore, knowing at this point it is solving nothing. One more lengthy message criticizing everything that I am and the texts stop. My body shaking Jay hugs me until I break free and do another shot and another. After I say I am ok. The boys go into town to pick up something from one of the ForSale Facebook pages and leave my bestie and I to hang out. The clarity of the next couple hours escape me.

My brother ends up showing up as I hear his voice from the bed I am somehow sleeping on. The earlier events still linger in my soul. How much longer does this go on? I am so tired. I roll off the bed not sure how long I have been sleeping for. Out in the kitchen my brother and Mal are sitting chatting, having a beer, a normal Saturday afternoon. I smile and say “What’s up” but as I sit and try to be social I feel the excruciating exhaustion overtake my body. I try to centre myself. I try to engage in light conversation. I try to get the happy easy going Stephanie back. I try to get back to normal but I am just soooo incredibly tired. The boys return and I tell Jay I am ready to go home, I think it is late afternoon as I feel dusk settle in. He see’s the exhaustion in every ounce of my cells and walks me straight upstairs when we get home and tucks me into bed. dark. quite. sleep.

I wake in our bed and look to the clock, it is just after 8 pm now. Jay is watching TV beside me. I snuggle into his arms and sob. I stop for short moments over the next couple hours. We watch TV, we chat, we laugh, I cry some more. Around 11 pm Jay falls asleep. I continue my show. It is not good by any means but I can not sleep and the TV keeps my mind focussed on a terrorist attack when all of America is destroyed by itself and this little town has to try and rebuild. “Are you still watching?” Yes! don’t judge me Netflix! The sun begins to rise and Jay wakes, “Did you stay awake all night?” “No I fell asleep for a bit” as soon as the lie leaves my lips I feel nauseated. “Yes I could not sleep.” I say. We spend the morning in bed with coffee and more of this very stupid show. I just can not seem to shut off.

My head is still racing from the phone call yesterday. The hardest part of being separated is when the boys are not here. I just need to know they are ok but I am so incredible terrified something will happen to Aiden and I will not be there. At 11 I text Josh “Is Aiden Ok?” I receive a photo of him sitting, eating bacon “thank you” I reply. My phone dings again “I’m really sorry about yesterday. If I ever let them call you I will talk first so you know everything is ok.” the night has cooled the space between us once more. I know we are both stressed out. We never really got along before Aiden got sick, so add one of the worst stresses anyone could ever have into into the mix and it is a recipe for disaster. We did not stand a chance.

The rest of the day is spent in bed. We order burgers from Milanos for dinner and eat in bed. I don’t want to leave the comfort and security of my room. I finally fall asleep for the night waking to Monday, it is the MRI Day and time to pick myself back up and put myself back together for the upcoming week…

New Years and the Unavoidable Conversation

by

Mommyyyy, Mommyyyy.” I awake in a panic. I call out Aiden’s name but then realize he is at his Dads. “Where is my phone?” I look to my side table, it’s not there. I rush downstairs and pick up my boyfriend Jays phone from the table. “What’s the number? What’s the number?” I send text to Aidens Dad, “Is Aiden ok?” Panic filling my body. I could hear Aidens voice so clear calling for me. He needs me, something must be wrong. I call. No answer. I run back up the stairs. Jay turns on the light to help me look for my phone. It is on the floor, just under the bed, dead. Jays phone rings, it’ Aiden’s Dad.

“Is Aiden ok?” I answer the phone in panic?.

“Yes, here someone wants to talk to you…”

“Hi Mom”

“Hi Sweetie, how are you?” My body relaxes. He sounds great. He sounds happy, He sounds alive.

Exhaustion can not even describe the tiredness

I feel like I am living a nightmare that is on repeat. The last three weeks have been a fog. I feel displaced, I feel like my head is just not working. I am told by my therapist that this out of body experience is quite normal for my situation. I am told that when a body goes through trauma it tries to protect itself. My mind is honestly trying to protect itself as it leaves my body, just hovering slightly above me. I once again move into this state of feeling like I am just a spectator in my life, a narrator in a movie but not really a participant.

Day’s before New Years, Aiden lay in my bed, hardly able to walk. Walking to the bathroom only a couple steps away was a feat comparable to climbing Mount Everest. He was just so tired. His head ached everyday with Tylonol around the clock. After two days with no sign of him wanting to even lift his head I wrapped him in his soft Minecraft blanket and drove him to CHEO. Fearful it may once again be a be a shunt blockage but more so fearing the worst, that the cancer was progressing. He had an MRI booked for Monday but I could not wait the 4 days. We were ushered right into Emergency and after a quick assessment Aiden was sent for CAT Scan and X-ray. He did not resist any of the nurses pokes and prods, he was just too tired, his fight was going. The scan showed this extreme fatigue was not the shunt. My body trembled as I was told there is a lot of swelling showing and although it is hard to give exacts because the CAT scan is not as clear as the MRI it looks like the cancer is progressing.

Sweet Boy please wake up

The little grey haired doctor asks what I want to do? “I don’t know, I just don’t know.” She hugs me in her tiny arms and expresses she does not think this is the end yet but it is up to Aiden at this point. She tells me we should go over to the Rogers House for a couple nights so they can give him a steroid and monitor. The steroid will help with the swelling and give him the kick of energy he needs right now to get him moving again. The little doctor looks at my tear stained face and tells me she does not think I should be driving in the state I am in and assure me the house is very comfy. Ok, and we head over. A whirl of monition, signing of paperwork, review of medication and filling nurses in on Aiden’s “story” and we are finally settled. To my surprise the room is very nice room with a large bed and almost hotel like comforter, you know the kind that makes you feel like you are sleeping in a cloud.

Brotherly Love!

Aiden gets his first dose of steroid that night and we fall asleep together, Aiden wrapped tight in my arms. I wake to the sun rising out the window. I can not believe it, I slept the whole night and it was actually the best sleep I have had in weeks. Aiden wakes up and he does looks a bit brighter. The nurses come in for morning rounds and he is able to talk to the them and is sitting up in bed. The next days are a blur but the steroid seems to be doing the trick as Aiden can move from the bed to the couch and awake for longer and longer periods. Aidens brother Declan comes to stay with us for a night and we all cuddle in the big comfy bed. He is so lost in this battle. He fears he is missing out or that “Mommy and Aiden are not coming back” every time we go to appointments. I try to have him involved as much as possible but sometimes it is just not possible or I want to protect him from this other world. The house really is great but after that night I ask the Doctor if she thinks we are able to go home. She looks Aiden over and with a smile she agrees he is doing much better. She says that she does not see why we can not go home. It is the morning of New Years Eve and it would be nice to be home with all the kids and Jay’s mom who is visiting from Hawaii and I absolutely adore. I really just want our crazy blended family altogether to bring in 2020. I ask the Doctor to talk in the hall for a minute as my fears start to out-way my desires. I grill the doctor in privacy, out of Aidens ear shot.

“Are you SURE we are ok to go home?”

“Yes, I have been worried about Aiden the last bit but you are ok to go home.”

I make her promise that I am not going home to just wake up and find Aiden dead in his bed which is the fear that overwhelms me day and night. The tears seep from my eyes. She tells me the steroid is not a long term fix but it really seems to be doing its job. She tries to assure me not to fear that in most cases of medullobastoma it will not be that sudden but she is honest as she says Aiden may only have “short months” left and to prepare. I have heard this before. There will be signs, he will get more headaches, tolerant his feeds less and get more and more tired until he eventually just sleeps. I try to make her tell me exact timeline but knowing this is not possible. We end the conversation with me being hugged and told that I am doing everything I can and have been a great mother and advocate for Aiden through this voyage and that he is so lucky to have me through this. I wipe the tears from my eyes.

Don’t mess with Aiden when he has a microphone and the Floor is Lava!

Back at home the kids are in full fun mode. I am filled with joy from the energy and the chaos and the livelihood the kids all bring to the house. Aiden is so happy to be home too. Shining his smile and starting to crack jokes again. He really is doing much better. We all bring in the New Years with yummy snacks and the Floor is Lava game. Aiden uses the microphone to call out the colours from the wheel to the other kids and I really do feel so blessed in so many ways! We made it through another year! Fuck You Cancer!

The weekend is coming to a close, Aiden is still resting lots and of course I still worry. Jay and I talk and we decided that it is time to have a conversation with all the kids. We do not want them to feel there are secrets in the house. We do not want them to make up worst fears in their heads. We want them to know they can ask questions. We want them to have time to prepare. I want to explain why I have been breaking down in tears throughout the day or why my patience is shorter then usual or just that maybe sometimes I will not feel like playing and doing activities like I usually do. We fill bowls of Ice cream after dinner and let the kids know we want to have a “Family Meeting”. Aiden is upstairs in my bed resting. We all went to Jumanji 2 earlier that day and although he had a great time he is quite tired now. We start off with light conversation. What was their favourite part of our Christmas week together? Did they like the movie? etc, until Jay’s middle daughter, “R”, pipes up “Ok! enough chit chat, what are we REALLY talking about….”

and so we begin…

“We want to talk to you about Aiden. You may have noticed that he is not like he was before in the summer and he is sleeping a lot more.”

All the kids nod with solemn looks.

I continue, “Aiden is really sick, you know in the Jumanji movie today they said “Growing old is a gift?””

All the kids nod.

“Unfortunately, most likely, that is not a gift that Aiden has. We are not giving up hope and we are still trying to find a cure or a different treatment for him. There is a possibility of something in the States and Aiden has a MRI Monday and I am still trying with the hospital to find something else but we wanted to let you all know that when we were at Rogers House I was told that most likely Aiden only has short months left and most likely Aiden will die from his Cancer.

Silence.

We want you guys to know that if you have any questions please ask us and most importantly we want you to know how lucky we are to have been able to make all the great memories we have. I look around the table… each kids so different in personality and reaction. D’s eyes filled to the brim with tears and a look of disbelief. “I never thought it was that bad” she says as the tears slide down her cheeks.

6 kids, 6 rolls of tape! Let’s make the basement a room full of Lasers!

I continue. “We are so lucky to have so many great times together and that is what we focus on. That is why I try to make the most of everyday and to show you guys how beautiful life is with crazy activities and adventures. That is why we need to appreciate that we can go tobogganing or just run around because that is something that Aiden can not do. Most houses do allow snowball fights inside or go on spontaneous RV Trips to Sana’a village. In the summer, I really thought that Aiden would not make it to Christmas and that is why I wanted us to go and have a Christmas in July together as a family. Aiden is a fighter and he has tricked the doctors before but we want you guys to know now because it is very serious and we do not want you to be surprised or scared if the time comes.”

I see the tears start forming in R’s eyes, but just as quick as the tears form she forms a joke “So can we have more snowball fights in the house?” It is so surreal seeing your own insecurity defaults in a child of 8. I have been told many times in my life “I think everything is a joke” but this is my way of protecting myself. I try to brush off my deep emotions with a joke or acting like it really is no big deal. But as I see myself in this sweet 8 year old girl it breaks my heart more.

We ask the kids if they have any questions. Declan who is sitting in the chair right beside me expresses his worry that Aiden and I are leaving again. I assure him that if we go anywhere that he will be coming this time, he hugs me and this seems to comfort him. The girls asked if they could visit which of course was a yes. Jays youngest of 5, “L’s” reaction was in the middle between R and D and Lynkon, sitting on the dining table at this point breaks out in, “We will, we will, rock you!” We all laugh, thank you to the innocents of a 4 year old to bring the joy back to the room. The kids leave the table to continue their play and Lynkon continues to sing. Jay and I comment to each other that overall it went the best it could have and we feel better knowing that the conversation is now open and they will have time to process. I have had 3 years to process and I still have no clue half the time how to get through this. It is hard to really know how much kids understand or comprehend of death.

True friendship is one of the greatest gift to give someone

I head upstairs to check on Aiden and notice the door to the girls room is closed. I knock softly and open the door. Under the protection of her lime green and white duvet on the top bunk, “D” lays with tears rolling from bloodshot eyes and down red cheeks. My heart pulsates a little faster as a clench my jaw to hold back my own tears. I do not remember who speaks first but words escape and “D” quietly cries to me, “Aiden is my Best Friend, and I just can’t picture him not being here.” I am shocked by the simplicity yet the resonating truth of this. I confirm that this is exactly what I feel too. It is so impossible to imagine a world without Aiden. I tell her how incredible lucky I feel to have her in our lives and how special it has been that Aiden has her as a best friend. Aiden hardly goes to school and does not play with many kids so it is so amazing to see how Aiden lights up when the girls come over, and specifically lights up with “D”.

I explain to her that that is an incredible gift that she has given Aiden this year and that is something she should be very proud and happy about. I also explained how it is so important to live each day to the absolute fullest and just be true yourself and your happiness in life because there are so many uncertainties in this world and that is something that Aiden has taught me through this. I then make a joke which I forget but remember it makes her laugh and I ask if she wants to come watch a show upstairs with Aiden and I. With a smile she hops up and runs up the stairs to jump on the bed beside Aiden, who gives her a big smile. Soon all the kids fill our room and we settle in with popcorn and snuggles and Kindergarten Cop. Our last slumber party of the Christmas break. The next morning the girls head to their mothers and the boys to their Dads. The house is so quiet which causes me to feel uneasy. The calm gives room for my anxiety to grow but I also know I need this time to absorb all the events of the week. I need this time to freely sob and to just stay in bed and sleep and recharge as much as possible. Aiden has a MRI on Monday which will give a clear picture of how much growth there is and what the next steps will be. It really is just one step in front of the other at this point, to just keep swimming…..

The Weight of a Mama

by

I can’t even use the word exhausted to discribe our lives right now as it does not even come close to the actual feeling. This round of chemo is taking its toll, beating Aiden down so bad he can hardly hold his head up. For over a week now Aiden has pretty much been on complete bed rest except for frequent trips to the washroom to expel everything from his body. I stopped Aidens chemo two days ago to see if it would help but he still continued to get worst with added headaches and excruciating tummy pains. I took him into Cheo this morning fearful of being admitted and how I would explain it to Aiden if we did. Every trip just seems more and more difficult as Aiden screams at me how much he hates me and I am doing this to him and things I dear not repeat. My heart breaking with every cry that he wants to die, screaming to let him die cause he is going to die anyways. And I get it, I would hate me too. I am the one who takes him to 99% of his appointments, I am the one who holds him as they struggle to put IV in. I am the one who tells him we are trying to get him better yet I give him medicine that makes him puke and shit and looses his hair all at the same time. I am the one that pushed him to try school for even just a half a day or takes his iPad away for being rude or not listening trying to hold on to a small normalcies of childhood and teach him lessons to grow into an amazing man someday.

He does not see me fight for less needle pokes going from 4 a month to 1. He does not see me arguing with nurses to try hydration first so that he can go back to the comfy bed at home instead of getting admitted. He does not see the endless emails I send out following up on trials or the phone calls to organize prescriptions from three different pharmacies. And that’s ok because I can not imagine what he feels everyday for the last three years. I question everything, how much more can we do of this? I never want to loose sight of quality of life over quantity and am fearful all the time that I am loosing my perspective that I have held so dear. But I am not ready to give up so we push on! And if that includes being spit on and yelled horrible names I will take that as my weight to bear. I will take those actions and words and hold him and cry that I love him as he claws at my neck till I bleed Because it does not even come close to what he has been through for the last three years. And I know after the IV or needle is in he will still cuddle me at night and tell me he loves me. And I will see the hydration working and him spruce right up for the first time in days. And the feeling I have now as I listen to him asleep in him comfy bed beside his brothers and think about the songs he sang on the way home from Cheo and the movie night seeing frozen with Kids Kicks Cancer Karate

Group tonight and I know I did the right thing today bringing him to Cheo and fighting for the best care for Aiden and not just following the recommendations not specific to my sons unique needs. So I fall asleep running my neck and accept this exhaustion as the weight I must bear.

Childhood Cancer Awareness

by

One of the first weeks of Aidens diagnosis, inpatient in the oncology wing at Cheo, 4 North, I remember talking to another mom in the hallway. Her son was a teenager with ALL Leukaemia. He was on isolation, meaning grounded to a small room unable to leave and have as few visitors as possible to avoid bringing in anything that could attack the immune suppressed body. His mother told me how miserable he was and all he wanted to do was play video games and resent the situation. His initial treatment plan was a minimum of 3 years. I remember thinking how tough that would be; first being a teen when all your friends are out at parties or learning to drive and you are stuck in a hospital bed and second I could never imagine three years of treatment! We were told 6 weeks radiation, 6 months Chemotherapy and 70% success rate. I felt like we got off lucky, I felt thankful. I felt so bad for this mom as I saw the pain in her face as she told me about all the friends her son had lost and the toll it took on her relationship with him. It is not normal for a teenager (or any child) to be with their mom 24/7. I saw that tired, broken look in her eyes that she tried to hide with the rehearsed lines of hope I have become all to familiar with. And now 3 years later I realize I am that mom.

I have tried to figure out when I lost that fight, that strength, that idea that there was a reason for all this, that it would make us grow stronger or somehow we could make a difference. I had real Hope not the rehearsed lines I think people want to hear. I follow so many cancer families on social media and I see the newbies with that fight still in them and as much as I try and want to I just don’t know how to get it back. That energy that we could go to the ends of the earth to find a cure and beat this disease when in all honesty some days I hardly have energy to get out of bed. I post photos of us swimming, and doing arts and activities and try to make this voyage shiny and golden but in all honesty it takes every ounce out of me. I use to never cry or if I did it was far and few between in the dark of the night in my pillow and I would never let my kids see me cry. Now I can’t stop the tears flow throughout the day, a simple walk to the mailbox, in the waiting room at Cheo, at Canadian Tire, at Walmart, Grocery Store, driving, sitting, eating it no longer matters and I have no control.

Last Friday, I went to emergency for myself. I have started getting panic attacks, waking up 3 to 4 times a night in panic to check that Aiden is still breathing. For days I tried to push through it, for days I walked around with what felt like two hands wrapped around my throat gripping tighter and tighter and pushing harder and harder on my chest. For the better part of two years I have been able to push through bouts of sadness. I have not needed medication or I would go on for a bit and then get past a difficult time and be able to go off. I have actually been on 3 different medications now. All the side effects were worst then the sadness. The last medication in the summer caused my heart to pound so fast that I would have to sit down, but I thought it was stress and my anxiety acting up. Then I started getting bruises, I thought it was summer maybe I was just out doing more but it got so bad I could not sleep on my side without getting bruising on the whole side of body. And finally dripping, soaking wet with sweat, I thought it was just really hot, it was summer. It was not until my friend, who is a nurse, came to visit and saw me suggested I look up the side effects of my medication and there they were all listed right along with if you experience these go to hospital. I cold turkey’ed the medication (do not recommend) but in a week my body returned to normal and I realized how not normal my body had actually reacted to the medication. I was fine for a bit, fine until Aidens scan July 15th and but it has just been a downward spiral of mental health since then.

I have not posted the results from the July scan as I have not known what to really post but here is where we are at…

July 15th MRI day… July 16th we go on huge family RV trip, it was great, I still had fight and the fuck you cancer attitude. We went to Santa’s village and celebrated Christmas in July. Cancer was not going to take Christmas from me this year. I was ready for whatever the results would be. We had an amazing week, blended family, 6 kids, one in cancer treatment all together in a 30 ft RV together for 5 nights obviously it was not without incidents but at the end of the trip Aiden told me how much fun he had and thanked me and hugged me so tight it washed away all the times he yelled at me that he hated me that week. And in looking back it was a lot of the most chaotic “what were we thinking” moments that made the best memories.

Aiden off Chemo for 3 weeks with eye lashes and energy!

July 22nd hard fall back to reality… Aidens scans were not good, to the point we were told to take him off Chemo, which we did. We were told to just enjoy the time we have and focus on quality of life (a line we have heard so many times) our oncologist suggested we meet with radiologist with hopes we could buy more time. I feel like that’s all we have done these last three years is just buy time. We have bought more time then ever thought possible but I feel utterly broke at this point. The news was hard but I knew this was coming, I had been mentally preparing myself for this day for so long. It was amazing how fast Aidens hair grew back off chemo and It was a good feeling that he would have his hair back once more . It was also more sad cause he had more energy and was feeling better then I had seen him in so long with out the poison of chemo taking him down.

The following Monday I had an appointment with the funeral home. I needed to know what was involved, what the cost would be, what I would need to do, all leaving me with very different stresses and reliefs. I questioned whether I was being an awful mother, planning a funeral for my son who had no clue he was dying? I also did not want anyone with me. I did not want to feel like I had to be strong for anyone else and I could not imagine anyone else planning this if I could not emotionally when the time came. So Monday came and I went and I did feel a bit better having a plan or just an idea of what was coming. Waves of heart wrenching grief and acceptance rolled through me all week until Friday. Aiden’s Dad was taking him to another MRI that would give us a baseline if we decided to do radiation. I was at my Dads trailer chatting with his wife, it was a sunny day late in the afternoon when my phone rang. It was the oncologist. We usually had to wait a week or more for results and never once had the oncologist called me let alone on my cell phone outside business hours. I was told that she was actually sitting in a airport waiting to go to Vancouver for a conference but she just got the MRI result from the the scan in the morning and it looked like Aiden’s cancer had shrunk 2 cm! She did not know why, maybe there was swelling before and the chemo was actually working and told us to put him back on chemotherapy. I remember my reply “If my kid was not dying I would fucking kill him!” I had no clue what to feel now. did this mean he could beat it? did this mean I may not loose my son? I asked that she was sure the scans were his, which she said she doubt checked. I asked that all the scans be sent to Sick Kids for second opinion. If the chemo was working, if his cancer had not grown resistance to the chemo maybe there was other options now. I was assured she would and that we would have appointment the following week. My head could not grasp what was happening, Aiden had now been off Chemo for almost 3 weeks, does that mean it is now grown all back again? What part of the cycle are we in to know the chemo to put him back on? How do we beat him down once again when he was just starting to feel better, eating food, not vomiting, eye lashes grown back? I did not know either to cry and smile.

Scan From July on left compared to May on right

August 6th, Aiden’s Dad and I met with the Radiologist, even though this as off the table now the appointment was already set so we decided to go for the information at least. We were told that the radiation would not be curative and if it did cure the cancer  with the devastating  long term effects of the radiation it would not be a life worth to live. We then went to Rogers House , to another appointment that was originally set to plan end of life care and to tell Aiden and his brothers that Aiden was not going to get better and he was going to die. The Palliative team knew of Aidens latest results and we discussed starting therapy again for the boys, and how we would start the conversation about Aidens illness with them, but since it was not dire need anymore we decided that it did not need to be that day or at least until we had more information of what this new scan actually meant.  the conversation got heated and emotional and it ended with us being set home with some paperwork to go over and sign when we were ready.

That week I tried to get a ahold of case worker to make an appointment and figure out what the next steps where, what chemo Aiden should go on, and just answers of why his tumours would have shrunk. I was told the oncologist was away at conference. I tried to reach our case worker to find out she was away on summer vacation and I left messages for the lady covering for her with no reply. So now I felt abandoned and clueless on what to do next. Every day that passed I just imagined Aidens cancer growing bigger and bigger. Finally our caseworker returned my phone call and an appointment was made, I was assured  it would be with our oncologist and that I could get some answers to the questions I had asked and I had hoped we would be presented with a plan from Sick Kids after review that could be curative. I have not said much negative about Cheo in my blog up till this point. I am sure they are very good in many areas, and I have questioned many times if I am just over emotional and that is why something seem way bigger then they are. But I will also say I have now been to Sick Kids, Mass General in Boston, and CHEO and there is a huge difference in the care that is given the main being Pro-Active vs Re-Active.

So finally, the day comes for this long awaited appointment (Aiden now off chemo for 4.5 weeks). Aiden and I sit in the waiting room, Aiden gets his blood taken, we wait some more, after over an hour we are finally called to the back and a resident comes in. I immediately ask where DR J is. “She is not in clinic today” I break down. “I specifically asked if the Dr would be here and I was told yes.!” My voice rising and crumbling at the same time as I let all my frustration out on this poor resident we had never met before until she finally says she will try and find our caseworker. Our caseworker enters, who I really like and she has been wonderful through this but I pounce now. “We were told take him off Chemo, then put him back on, then everyone goes on trips and leaves us with no one to tell us any information or to even give us a script to put him back on chemo. I asked over a week ago if the results could be set to Sick Kids for second opinion along with other questions which have not been answered. I made a point to confirm with you that we would talk to the Dr today and go over everything. At this point I don’t even know if we should go back on chemo, he is just starting to feel better now we are going to rip that all away from him once again and for what?” I am full on tears now, Aiden quiet in his wheelchair, as the caseworker tries to calm me with empty apology of miss communication and confusion. I ask when Dr is back and I am told we can get appointment Monday and then get the prescription if we decide. I ask that she release the script today so I can just meet with Dr and would not have to wait another 3 hours for the script. “well we can’t release the script unless you are going to do the chemo” “Fine I say we will do the chemo, release the script.” “Ok I can do that”   I leave the room yelling “I wish I became a fucking oncologist because I would be getting paid a fuck ton of money to do fucking nothing!”

I am really not this type of person. I have a very long long fuse. I do not go off on people, I am not hateful or hurtful and usually smile and joke things off but my body is trembling and this is all to much for my head this back and forth and limbo of what to do. Monday comes, I have the kids with me, planning on heading to Costco then trailer right after this quick appointment with Dr J. The kids play in the waiting room and an old school mate of Aidens is there, who also has brain cancer. It was actually nice seeing him up playing, they have had a very hard road as well. After a little wait we are called back. Our oncologist is actually there this time and I ask if she sent scans to Sick Kids, I see the scans on the computer for the first time and can visibly see the size difference although part of me regrets seeing the scans cause either way its really fucking bad with 4 major spots that remind me of when we first came in 3 years ago. I am told she has not heard back from Sick Kids but she really recommends we start the chemo again. I agree and am then told that she will release the script to be made…. Pardon? I feel the hands around my neck tighten and my heart pulsates faster. I was told Friday the scripts would be ready for pick-up when we got here now what we need to wait 3 hours?!? I demand an answer. “Well I did release them but then unreleased then cause I thought you might want to get it at another pharmacy” I am dumbfounded at this point as there is only two compounding pharmacies in Ottawa that can make this drug and we have never sent scripts to the other one. I am fuming at this point, with all my will trying to hold it together. Dr tells me she will call down to the pharmacy and see if they can speed it up. Fine. I am told they can do it in the hour so I say I will go to Costco now and come back and pick up. My grief for my child is now being replace my hatred for the hospital.  Off I go to a super busy Costco close to Cheo I had never been to before with a slew of children. That alone is stressful as I am use to the Terry Fox Costco which is busy but not insane and I am just familiar with. What was suppose to be a 20 minute appointment is now rolling into 3 hours. I go back to Cheo, to the pharmacy to get the script. “That will be $170” WTF! We have never paid for this chemo before and I do not even have $170 in my bank to cover it. I loose it on the poor pharmacist at this point “I have never seen such poor communication in my whole fucking life! This hospital is a fucking joke!” and I turn and leave the pharmacy as anger is replaced with helpless loss and flood of tears.  Back in the van I call the caseworker and start to drive to the hwy to at least try and salvage some of the day. Feeling so bad for the kids who have been good as gold but stuck in van and hospital for half the day and now seeing me with tears. The case worker picks up and I explain what happened. The caseworker tells me yes the script is covered but the paper from the social worker must not have been put through, she will need to get ahold of a social worker to sign off before I can get the script. She puts me on hold for a couple minutes as I continue to drive now on St Laurent, She returns to phone and tells me to come again they will release the script and she will figure out the paper work after. So back again to Cheo for the third time that day. I go in to pharmacy and immediately apologize for my behaviour. I know it was not her fault and I am really sorry for taking my frustration out on her. I am told it is ok and handed a bag of poison, oh I mean Chemotherapy.  So Aiden goes back on Chemo again. You would think that would take us to current date, but one more great customer service story cause I guess God thinks I am stronger then I really am, but I really can not handle much more.

Needle poke not happening today

Aiden finished that round, 21 days. His hair is now falling out again and he is vomiting and has had diarrhea for weeks. We have an appointment, which I once again confirm is with our Oncologist. I even checked My Chart and it says blood AND visit. Aiden and I wake up and head to Cheo, I have ran out of Emla Patches at home so go straight to blood place to ask for one. it is usually not an issue and then gives us enough time to kick in before Aiden actually gets his blood taken. So we wait in line to be told the clinic is out of patches. Ok I say and we head to MDU to check in. I can see Aiden getting anxious. He puts his arms in his sleeves and tells me no one is going to poke him. I check into MDU reception and ask for a Emla patch right away so it has time to work. I am told they will go get one and we go sit down. The clock ticks by and finally after and hour we are called for blood work. I tell the nurse that he needs a path or he won’t do it. Aiden is in a ball on the wheel chair now. I can not even begin to imagine how he truly feels after 3 years of pokes and prodding. I use to be able to keep a smile on and not show fear or sadness but everyday this gets harder and harder to do and all I can do is beat myself up over it. The charge nurse finally comes over and I tell her I am not holding my son down anymore, I can’t. we have waited here for an hour, I asked for a patch an hour ago. I am crying now in the waiting room, I feel like a criminal asking for these black market patches that will take all my sons anxiety away. I am told it is just blood work today and she will go get a patch.  No, I say, it is bloodwork and visit with the Dr. We debate this as I get more and more upset. The social worker then comes over and moves us to the back room. I guess it does not look good a mother crying in the waiting room beside here obviously very sick son in the clinic with other cancer kid families. Aiden is curled u in a ball on the wheel chair, I can not read if his expression is that of hate, anger, frustration, determination, or all of the above but I know right then this needle poke is not going to happen today. Finally the charge nurse comes back “oh you are right, it is with Dr J and he is suppose to start his next round of chemo today” I am in full on tears and full of anger and frustration. The social worker leaves and comes back with a whole box of Emla patches, she also brings another lady into the room, as I start to go off at how awful this hospital is and how awful the communication is. I tell this new lady taking notes all the discrepency that have happened since Aidens diagnosis. I have held so much in giving the hospital the benefit of the doubt but I can’t hold it in. I tell her we have been put in isolation room for 2 hours before then told oh sorry no one told us you where here. Is it that complicated? and you wonder why Aiden is pissed and won’t cooperate when you want to poke him with a needle?  I tell them that I should not have to get to this breaking point for the hospital to react, it was like this at the beginning. it was not until I was in full on tears yelling “What do I have to do to take my kid out of this hospital and drive to Sick Kids!” and then all the issues were resolved, same as right now. I tell her about the recent wait on administering chemo because everyone was away on summer holidays and conferences and even today no one knew but me Aiden was to have clinic and see doctor to start new chemo. This is now dealing with life and death! on yeah and now the social worker will write me a script for Emla patches that will be covered. I also tell her that I feel like since they told me this was it for Aiden the service and communication has gotten even worst its like they are just giving up “oh this one’s a goner let’s now worry about them any more!” I finally calm down, Dr comes in does a quick assessment, still no answers on second opinion from Sick Kids or really much of anything and we decide to come back Monday for blood as it is obviously not happening now. Aiden and I leave, once again delaying his chemo that is “for some reason” “maybe” working now?

Last week Aiden went for his 30 something MRI….we are to get the results tomorrow. I have prayed every-night that God take his cancer away but all I see is the growth from all the time waisted these last two months and I am powerless to stop or control.

I did not mean this post to be a rant about Cheo, but I do feel a release in sharing all that has been bottled up. I started this blog to hopefully help other parents in similar situations, but how do I do that if I am not honest about the fears, embarrassment, sadness, exhaustion, grief, mental health, the ups and downs that spin you so much you never think you will stand on straight ground again and all of which are very real parts of Childhood Cancer.

How to Help

I am so incredible grateful for the support we have and continue to receive from our friends, family and community. If you follow Aiden’s Voyage on MamaOutpost please consider making a small donation to help with medical expenses and daily living expenses for our family. 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. Any contribution would be greatly appreciated.

Food for Thought

by

After a nine month wait for a feeding study we are finally here at Cheo to figure out how we can help Aiden get off g-tube and back to eating normal foods. Aiden has extreme difficulties eating and has been 99% Gtube fed for 2 years now, often coughing or gaging on food. I have questioned whether it is still physical difficulty and silent aspiration from when he first had surgery and could not eat, if it is the effects of chemo giving him no appetite, if it is because he had little to no oral stimulation in the last 2 years or if at this point it is a eating disorder and more mental health issue.

The full study includes eating food with different textures in a chalky paste called barium and then a X-ray machine watches the food go into his body and can see if food is going into lungs instead of stomach. It was to no surprise that Aiden absolutely refused to try the chalky paste but he did sit with the occupational therapist and showed her how he ate banana, banana bread and drank Tim Hortons peach juice (the only liquid Aiden will drink). We sat with OT and discussed different food Aiden liked and disliked. Some foods he said I have never seen him eat or I have seen him take one bite and gag and cry. Aiden also gets extremely emotional when we talk about food and how much or little he eats which also makes it hard to have conversation with medical professionals sometimes. After assessment OT did not feel it was a physical issue, Aiden seemed to chew and swallow ok which was a relief and we were able to cross one thing off.

Aiden very pleased he will not have to drink the barium for feed study

I was asked if Aiden was followed by a nutritionist, we had seen one months ago when I was concerned with his weight and fluid intake and once when we first returned from Toronto but not one regular. A referral is now being put in to figure out plan to decrease feeds so Aiden is more hungry which could be a contributing factor to not eating. When we left Holland Bloorview Rehabilitations in Toronto we were told this would be the next step when we returned home but was never discussed again.

The second suggestion was to have Aiden chew gum and brush teeth more (even with no tooth paste) to increase oral stimulation. This was the one area I felt was a major issue in the difficulties eating. There is so much involved in the process of eating, I felt that it was difficult for him, guessing because he was not use to feeling anything in his mouth anymore. The final recommendation is to offer foods before feed and try to schedule feeds at family meal times so we can all sit together.

So let’s put this into play… that night back at home, dinner time which consisted of spaghetti and garlic bread. A pretty standard meal. I asked Aiden to put him iPad away and come sit with us for dinner like the OT suggested… well all of a sudden the smell is over whelming for him, the food is gross and he hates me for making him put the iPad away and he storms off to his room….. maybe we will try the chewing gum suggestion next

How to Help

I am so incredible grateful for the support we have and continue to receive from our friends, family and community. If you follow Aiden’s Voyage on MamaOutpost please consider making a small donation to help with medical expenses and daily living expenses for our family. 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. Any contribution would be greatly appreciated.