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……
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…
How to Help
I am so incredible grateful for the support we have and continue to receive through our friends, family and community. December 2017 we were given a life expectancy of a couple months. We are now in year three and fighting everyday to beat this awful disease but I have been unable to work in order to care for Aiden and receive no child or spousal support and very limited social service funding. Donations will help with all of the medical, travel, and accommodation expenses that I have incurred over the last three years as well as those expenses that are still coming. Donations will help with daily living expenses and will ensure the boys have great memories together for whatever time we have left.
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Stephanie (aka MamaOutpost)