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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

On Monday,  The University of Ottawa Faculty of Medicine Smiling Over Sickness Group hosted their annual Shave for a Cure event in support of Childhood Cancer Canada. Every year, medical students raise funds, cut their luscious locks and shave their heads in support of Childhood Cancer Research. It was an honour to speak at this event and share Aidens story. Even more so to have two of Aiden’s school mates raise money and shave their heads for this cause. Thank you Emily and Bella! The event raised over $26,000 this year!

 “Just Keep Swimming”, this has been my go-to saying through this voyage. September 2016 our family was thrown into this whole new world I knew nothing about. I had no clue what cancer was beside what I vaguely remembered from grade 11 biology class. Aiden had been complaining of headaches, sleeping a lot, frequent vomiting, and eventually unsteadiness walking. I had taken him to our family doctor, paediatrician even psychologist over the summer. We had no answers beside possible “viral fatigue” or a learning disability. I finally took him to CHEO, retelling the same story I had told so many times, they immediately sent him for an MRI. I will never forget when the doctor came back to the room telling me “we found a tumour on his brain and lesion on his spine” my response, “your joking right?” I think I was expecting cameras to jump out, how could this be real. And ever since that moment we have not stopped paddling trying to stay a float. To find safe land to rest on.
Aiden went for surgery almost immediately where after 16 hours they were able to remove a large portion of the tumour on his cerebelum, the lower part of his brain, also the part that effects motor skills, balance.  This surgery left him with something called Posterior Fossa Syndrome. He had lost his ability to walk, talk and swallow.  I knew he could understand and hear he just could not get anything out. This was devastating and I was told it could last anywhere from a couple days to 52 weeks. The tumour resected was sent off to pathology which came back telling us it was a type of cancer called medulloblastoma. One of the most common brain cancer in children. We were told radiation and chemotherapy were the only option. The side effects of Photon radiation offered here in Canada were devastating, no independent living, infertility, high likelihood of secondary cancers in other parts of the body.  After researching other options we learned about Proton radiation available in Boston which had less secondary side effects and more exact targeting. There is a lot more to this story but long story short, Aiden’s dad stayed at home with his two brothers, Lynkon 2 and Declan 6  and Aiden and I packed up and flew Ornage medical vac to Boston for 6 weeks of Proton radiation at Mass General and Intensive Rehabilitation at Spaulding. We traveled in ambulance everyday back and forth the Proton centre where Aiden was sedated everyday for treatment. He suffered such sever radiation burns down his spine that they cancelled his last treatment with fear of damaging with brain stem. While at the centre there was map on the wall with little stickers from where everyone came from and there was stickers from all across the world. Just before Christmas that year,  we finished radiation and came home for a break before we headed to Sick Kids in Toronto for intensive chemotherapy and more rehabilitation. While at Sick Kids they offered to try a “sleep aid” called zopedine on Aiden,  it had shown positive results in bringing speech back in some cases of mutism. I was told it would either work or not work. I have gone almost 6 months not having one sided conversation with Aiden, anything was worth a try at this point. Within 20 mins of giving Aiden the “sleep medication” we had our first real conversation while watching Aladdin, “I wish I had a genie in a lamp.” SO DID I!  It was loud and clear! His speech has progressed ever since.
After the second round of chemotherapy Aiden had a slight hearing loss and they decided to cut back one of the drugs – I asked if it would be ok and  if it would still work. They said they give children the same dose, sometimes higher, as adults and that  kids are much more resilient not to worry.  We stayed at RHMT and went back and forth to Sick Kids for appointments, numerous MRI’s, running into Emergency in the middle of the night because of fever, extreme weight loss, finally treatment ended and we came home to Almonte after 6 months.  We were told scans were good. Aidens appetite returned, hair regrew, weight gained but thinking we had beat this, that we had found our dry land, was short lived and December 2017 scans showed new growth. Just like we were swimming again.
What was left from Aiden’s resected tumour was sent for testing to see what trials were available and we were told to think of quality of life at this point. Being separated as a family for the last year was hard enough, not only on Aiden but with two younger siblings. We decided to return care to CHEO to be closer to home. We started an oral chemo to hopefully slow growth at home as well as canabis oil which I was dead set against before. I remember our last scan visit saying to the doctor, “I really can’t believe that there is no other treatment options available. One of the top cancers in children and this is all you have to offer!”
I look back over the last year and half and  I still can not believe what has happened and is happening. I have tried hard to stay positive and focus on the good around every chance I get. Trying to appreciate all the moments that make up life so much more. We have tried to create as many positive experiences and memories for the kids through this. One thing I always take a moment to reflect on is that we are not the only ones this is happening to. Childhood cancer is not as rare as I once believed. The hospitals are full, children are having their time stolen from them everyday, parents are searching for more and better options from around the world.  To everyone who helped organize this event and to all those who have raised money and are shaving their head today I thank you! There needs to be more research in childhood cancer, more awareness and better treatment options. And until there is we just keep swimming and never give up.”