I do not even know where to begin in updating on the last few days. Needless to say it has been a roller coaster.
Since Monday, we have been back and forth on the proton treatment available in Boston. We were booked for Aidens photon radiation at 10:00 am Monday morning at Cheo, but since we were in communication with Boston we had asked to postpone until Tuesday. I asked for the latest appointment possible, giving hope that we could hear back from Boston in the morning. Tuesday morning arrives and I receive a call from Boston saying The Ministry approved the treatment, how fast can you get down here, they can start treatment on the 3rd if we get there today or tomorrow for set up. I could not believe it! “Ok, Ok,Yes that’s Great! I will look up flights for tonight!” – Hang up phone… I need passports!!! I had my renewal photos taken on the weekend and had filled out Aidens application the previous day. I quickly googled the closest passport office and ran to my car. 17 minutes later I was at the passport office in the prescreening line. Oh Crap! I had forgotten MY photos in the Hospital Room. It was around 11:00am at this point and the passport room was pretty full, I called a longtime friend (also the gaurenteer on Aidens Passport). After waking her up on the 10th call, she says yes, she will go to the hospital and get the photos and bring them to me. CHECK! I get to the front of the line and holding back tears I explain the situation. We need to get to Boston tonight, We can not delay….. She looks though my stuff, I explained my photos are on the way, she looks through Aidens stuff.. where are his photos? A small part had thought that he would not need photos because of a medical urgency and he was a child and that they might bypass in these situations…No they do not. She advised that sometimes photographers will go to hospital for premium fee.
I recall I had seen a sign, while driving in, on the building,”Passport Photos”, well that seemed like the logical first step. After sometime finding the actual storefront, I did, and once again explained the situation. The photography said that he did do this kind of thing but did not have a car today… “I’ll Drive You,!” I shout. He made a couple calls, ok he was good to go. He did have an appointment at 1:30 but thought we should be ok for time, it was 12:20 pm at that point. Well driving I texted my husband (yes I know), who had dropped Declan at school that day, to see how close he was. Could he get Aiden in his chair and also ask nurse about removing feeding tube for photo? He said he was close. We arrived a bit ahead of him and I led the photographer to Aidens room. Aiden was fast asleep on the bed. The nicest Health Aid who we had gotten to know “Gerry” was sitting with him. I explained the urgency of passport photos and we shook Aiden awake…” Aiden, Aiden, Do you want to go on a Jet Plane? Wake up Hunny, wake up…Open eyes, Look here…Close Mouth”.. CLICK,CLICK “We’re good, we can photoshop the background and the feeding tube!”the photographer tells me. No sooner had the lens cap been placed on the camera then the Oncology team came to the room…. We need to talk… and no sooner had they said that, the friend I had sent to get my photos arrived. “Great! Can you bring the photographer back and sign Aidens Photos?”.
My Husband amd I followed the team to the tiny room known as the Sens Den; it is painted like the Ottawa Senators hockey rink. We sit down and like a bandage being pulled off, are quickly told… You have only been approved for the proton therapy all other expenses (travel, hospital stay, rehabilitation, physician fee) will be a out of pocket expense. Our first question is the obvious, “How much are we looking at?” They are not sure and have not received any quotes but likely quite a bit. I guess at 50,000 -100,000 and quickly told that by the end you may be looking at closes to a quarter million. Our Hearts sink. It is so hard to accept that the best possible long term chance for our son has a price tag attached. We obviously can not pay. We say we need the numbers or some kind of quote at least. We have had numerous people approach us regarding fundraising, but do we have the time and it is ALLOT of money. At this point my husband is growing quite upset and so am I although we have very different ways that we show our emotions. The conversation ended that they are going to send an appeal to the Minsity (a bed is a bed, so if they would cover at the Boston Gerneral why not the Spaulding Rehabilitation Centre, and they will look into travel and get quotes) The concern now is time. I do not want to postpone treatment any longer. I keep asking if they have looked at Aidens MRI’s specifically. To see if HIS tumour is growing fast but I get the same answer; they put the info into a computer and it generates the protocol based on a sample population. I ask if every melludulablastoma grows at the same rate and they say no. This is probably one of the most frustrating things that they do not look at my son as an individual but a statistic. So we leave the meeting and I head back to the passport office. Even though it is not a go to fly tonight at least I will have the Passports just in case.
Once back at the passport office, I realize I do not have my purse now (I had switched vehicles with my husband because there was one idea that we may be able to strap Aiden to a stretcher and put him in the pack of my Chev Orlando and we could drive down) . I call my husband to bring me my purse. My phone rings, it’s Dr H from Boston, I tell him I’m just in line for passport can he call back in 20). I look at my number which is next to be called, and I ask the lady who just got her number to switch. “Oh thank you, thank you” she says. Although, I think I am the one more thankful. My number is finally called and I go to the booth knowing my husband will be there soon. He starts asking me questions. When are you leaving? – Tonight! I need proof of travel – We don’t know how we are getting there but I have email from Boston with confirmation – Ok email it to me he says. We continue… Applications filled out? – CHECK. Photos – CHECK. Long Form of Birth Certificate – WHAT?! So even though I had Aidens birth certificate health card sin card they needed the long form birth certificate! “How do I get it?” I ask. He tells me I can go online and order it then when I get to the proof of purchase page, screen shot it and then email it to him. His boss will then call to confirm. He also says they close at 2:30 it is just after 2 now! I get through the online form while he works at the other part (THANK GOD FOR SMARTPHONES!). Finally I email it to him with 7 minutes to spare. He also asks why my passport says Fotherby but my other ID says Verk. He pushes it through though…. (Thank You to the man at the passport office!) My husband shows up just in time to give me his bank card to pay. I write out a declaration of travel, when, where, why etc. He tells me they will need to call my references to come back between 3:30-4:30pm. I look at my phone it is almost 2:40 at this point I decide I will go get a bite to eat and sit and wait. There is a small Vietnamese resturant in the plaza so I choose a seat and order just as my phone rings it is our Caseworker. She has been in discussion all day with Boston, the Ministry and who knows who else it looks like OHIP will cover the proton, the physician fee at Boston general , the bed at boston general and rehabilitation at boston general. They still will not cover the way down there or the Sterling Center. Ok so what are we looking at now? Plane 10,500 USD, Sterling 124,000 USD . I ask her straight out what would she do if this was her kid, and of course she can not answer for me. That is all I want (well a part of me does) is for someone just to tell me THIS IS WHAT YOU DO! But they don’t…
I tell her to book radiation for tomorrow again I am so fearful to wait any longer. I do need to confirm with Josh though (or let him know that we are deciding to just start photon Radiation at Cheo) I will send her an email to confirm. It is over. My noodle soup, Pho, comes and also another phone call, this time from Boston, from the Radiologist, Dr H. We chat and I explain the situation. I tell him the cost they have quoted us and the state my son is in, He NEEDS extensive rehabilitation. Yes he may get rid of the Cancer here but at what quality of life? Dr H. Is very well spoken with a calming voice, he tells me to hold tight he wants to check a couple thing and will get back to me.
I go back to the passport office. They are still trying to get ahold of my references. It is around 4:00 now. I continually call my references, finally the one picks up and I tell her the passport office has been trying to get ahold of her they will call right now. I get a hold of the other in the meantime. They do the check and 4:20 I have passports in hand! OMG! What a day I head back to the hospital. I go check on Aiden, he is snug in his bed, he had been sick a couple times today but looks ok at the moment. The time passes and I assume that is it for the day. I tell myself get comfy this is our home for the next 6 weeks. Then at 5:30 pm my phone rings, it is Dr H. He says he has talked to everyone in the hospital in all different departments they debated the case. As he does not think our government works any later than ours he will call the Minister of Health in Canada first thing in the morning and explained that Spaulding Rehibilitation Center is a leader in Prostera Fossa Syndrome; that the two therapys are a package deal no way around it. It is the standard of care this boy needs. He says he just wanted to give me a call to not leave me hanging overnight and that he will call me tomorrow. I tell him we have radiation booked for 12:30 tommmorow and thank him fo the call. One more day. I do not respond to Virginias emails requesting confirmation to stop pursuing Boston….. I pray to god or who ever is listening to open the doors of opportunity and close those not of his will. If this is meant to be it is meant to be and it will all be covered or we stay in Ottawa.
To be Continued…..