When we first received Aiden’s diagnosis of Medulloblastoma in September we sent a referral to become a patient of Dr. Bouffet at Sick Kids Hospital in Toronto. We had been told by a couple people and researched for ourself that he was one of the top in the world for Children’s Brain Tumours. Now, 6 Months later, we sit in a tiny blue exam room at Sick Kids Hospital waiting for him to arrive. A 30 something ethnic women enters the room, she introduces herself as a resident and asks for our story, “From the very beginning?” I say. “Yes, the beginning” she replies.
It had been a long time since I have had to start from the beginning, but like a poem memorized by heart I recite the first symptoms, the timelines, the surgeries, the treatments, the medications, the side effects. She does a neurological exam on Aiden, one I had seen many times before. This one was surprising and encouraging. He stood up from his wheelchair on his own, grabbed her hand, and walked a couple feet to the other side of the room. Then with a little help hopped onto the exam table. She had him squeeze both her hands and with smiles and laughs he used all his might! “Very Good!” she said with truth in her voice. She asked Aiden to push out his legs against her hands, which he did quite excitedly. “Wow, much better then I had thought!” If you have ever seen Aiden, his go to position in his wheelchair is a pretzel position, knees up in a tight little ball. He really does look pretty weak and sickly at times so when he actually goes to move he surprises people. After a brief conversation the resident excuse herself and says Dr. Bouffet will be in shortly.
“Dr. Bouffet is coming! Dr. Bouffet is coming!” Clapping his hands, Josh exclaims in an impression of a teenager waiting for an autograph from their favourite celebrity. I immediately crack up. It was a pretty good impression and had a bit of truth to how we were feeling on the inside. Such a mix of emotions we had been feeling. I felt like our future was in this doctors hands, he was to be our saviour, he was going to come in with a plan and a confidence and tell us Aiden was going to be ok. That everything would go back to normal after this treatment and that the outcomes had high success rates! No pressure to the doctor or anything.
As wait, Aiden touches his fingers to his thumb to form a cup and puts to his mouth. This is the sign Aiden has started doing to tell us he needs a drink. He has started doing this most recently so I can only assume the Chemotherapy drug, Etoposide, is causing his throat to either hurt or become very dry. We stupidly look around the room, we have nothing with us. There is a sink in the room but Aiden is not “cleared” for thin liquids. I try to wet a brown paper towel thinking he could at least wet his mouth, but as he tries my “hack” his face instantly changes to YUCK! He is not happy and does the sign for drink again. Neither Josh nor I want to leave the room to go to the cafeteria incase the doctor comes in. We explain this to Aiden but I don’t think he really cares about this part. We explain that he needs to have something thick so we can not just give him water and we will get him a smoothie downstairs as soon as we are done. At this point Aiden is starting to get quite upset, we all are in different ways. It is painful to see a tap of water right there and unable to give our child a sip. We have no idea how uncomfortable he is feeling, what his pain feels like, what his thirst feels like. I last another minute and finally break down maybe we can give him a tiny sip of the water. I find a unused (obviously) urinal collection cup and pour a tiny bit of water from the tap. Josh is not looking impressed. I have Aiden sit up straight, chin down and pray this will be ok and tie him over until we leave. One sip and he instantly starts to cough (which I am told is a good thing as it is the bodies defence to bring the fluid back up from going down the wrong pipe). It was a bad idea but it did seem to tie him over. (I will be doing a Eating and G-Tube post in the future because that is a battle story of its own)
At this point my anxieties are ringing high, it feels like we have waited forever but only 15-20 minutes in reality. Finally, the door opens and a tall, thin man with a light tan enters. He is more gray-haired then expected but not a white grey, a grey grey. He is followed by the resident we had met earlier and another resident who is blond and dressed in a waitress looking outfit of white blouse and black pants. We do the introductions and all shake hands politely. Dr. Bouffet speaks with a very thick French accent, so strong it takes me a bit to register what he is saying. He talks to Aiden, asking how he is, if he likes movies. He includes him in our conversation which was scary and very nice at the same time. At this point we have only told Aiden what is happening, when it is happening. We really do not know how much Aiden knows about this trip to Toronto, just that we are going to talk to a really good doctor. Dr. Bouffet explains that it has been hard getting all the results from Boston and that is usually is. He explains there are usually challenges when children go for Proton Radiation because it is not a standard protocol in Canada. He also tells us that in recent studies it has been found that the success rates of the proton therapy versus the photon, used in Canada, are relatively the same but that if he had a proton machine here he would use it. (For us, it was more the residual effects that are less harmful as well as the Rehabilitation centre that were a determining factor of going to Boston in the first place.) He also informs us that it makes it more difficult because when he has sent a child to the USA for Proton Therapy it is a cancer where the only treatment is Radiation; in Aiden’s case, and with Medulloblastoma, the standard protocol calls for radiation AND chemotherapy. All that being said there a few options they are looking at right now. At this point I can feel the tears welling up in my eyes, a combination of being sleep deprived and overwhelmed. The first resident looks for a Kleenex box sensing I was going to crack soon. I think it is part of their training, to know the appropriate times to offer Kleenex. I thought we would come to Toronto and they would say “Ok this is what we are going to do!” but this was not the case.
Dr. Bouffet explains that for the 4 month protocol that we had planned on, the stem cells are to be collected prior to radiation and especially before starting the Chemotherapy that Aiden is on. Anger and confusion bubble inside. I felt lied to. I say that we were told that this did not matter, that this was one of our questions at the start and time and again told it would not make a difference. “Many children on this floor go for stem cell collection after they had started Chemo” I can hear replay in my head clear as if it were just spoken. I am now being told that the chemo he is on does not have a low enough dip to have a high enough rise to collect enough stem cells and that after radiation most kids can only produce enough stem cells for 2 cycles. WHAT THE FUCK! “So where does this leave us now?” I say in tears, thinking all hope is gone. “There are two option we are considering” Dr. Bouffet replies. “First, we need to find where Aiden’s tumour is so we can do more testing on it.” Dr. Bouffet explains that the “St.Jude Protocol” (the 4 month intense) is becoming outdated and it has not shown a higher success rate the other protocols but is more damaging on the body. He offers 2 approaches a 6 month plan or a 1 year option but informs us that the 1 year is actually more damaging to children bodies and he has seen it last up to 16 months. I am informed that within Medulloblastoma, Aiden has subtype 4 but within that subtype there are 4 additional subtypes. If he can find the additional subtype that will better inform his decision on which course to take. One subtype can show a 95% success rate where another a 20% for this information is crucial. “How can you do all the testing by the time he finishes this cycle?” I ask. Once again feeling the crush of time on my shoulders. He assures me it will be ok, tight but ok. The other information he is looking for is blood results from when Aiden received the radiation in Boston. The radiation burns was what started this tumble down the rabbit hole in the first place. Dr Bouffet explains that if aides “Counts” were normal during treatment he may just have had skin sensitivity, BUT if his blood counts dropped as well as the burns that would tell him something else. At this point details of the rest of the conversation get blurry. Aiden is once again excessively signing for a drink and I am completely overwhelmed. The room seems smaller, there are too many variables and what if’s of possible situations. I am usually the strong one, when we talk with the doctors, I hold myself together and present my thoughts clearly, this is not the case. I think I even ask again about the timeframe we have and what we are to do next. At this point Josh takes the lead and says at home we have some results from Boston we can send him and we can work on getting the rest of his medical records. There is some kind of plan in place as we get ready to end this meeting. Dr. Bouffet asks Aiden if he has seen Jurassic Park, with a huge smile Aiden nods there is some light conversation about movies and we all have smiles on our faces as the mood lightens in the room. We shake hands once again and go to the nurses station for the contact to send records to.
Onto the elevator and down to the cafeteria to FINALY get Aiden a drink. Thank god there is a smoothie bar and we order an extra thick Mango Smoothie for our very patient 7 year old boy. I look around the large cafeteria, with glass elevators in the centre of the building. I look at the diversity we do not see in our home town. I try to imagine our next leg in this voyage, I lived in Toronto when I was 18 but that seems like a lifetime ago. I try to think of how to explain to Declan we are leaving again. Can he come with us, but what about Lynkon? I wish we had gone straight to Toronto after Boston, I feel this would have been so much easier. It has been so nice being at home. We are all together, we have a routine, it is comfortable. I don’t know if I can do this again. All these thoughts and more rushing to my head as I watch Aiden happily drink his extra thick Mango Smoothie.