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!
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)