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.
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.
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.
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.
Aidens passing has been incredibly difficult but a lot less difficult because of the love and support we have receive from family, friend and community. Thank you to everyone who has sent meals, condolences, and donations so I can take this time I need now to grieve and take care of myself and beautiful blended family. I am so incredible grateful for the support we have received.
If you follow Aiden’s Voyage on MamaOutpost please consider making a donation.
Stephanie (aka MamaOutpost)