Wednesday morning, rise and shine. We have radiation booked for 12:30 pm meaning we will need to leave by 12 to get to the Ottawa General Hospital where they do the treatment. I sit in the plasticky hospital bed-chair beside Aiden, watching the clock and praying for my phone to ring. 9 am the physiotherapist comes in and says she needs a couple more things for her report and works with Aiden on his range of motion. She has been so nice with Aiden and tells him she will miss him and too keep up the good work (I tell her at this point she may still see us tomorrow but thanks very much for everything). It is now getting close to 10. I cannot wait any longer and I find the Boston phone number on my cells recent calls list. I was in such a panic yesterday I did not even get the doctors name who I had been talking to. I hope I get a direct line and not a general hospital voicemail.
Thank God, on the 2nd ring the doctor picks up. After an awkward introduction, “Hello, this is Stephanie Verk, from Canada, I believe I talked to you yesterday?” I apologize for not catching his name, “Dr. H”. I ask him if he has heard anything yet. He says he talked to the Ministry first thing that morning and asks if I want to know the pieces he has so far or wait in until it is all together. I tell him I need to know what is going on now or we will need to proceed here if nothing.
It looks like they will cover the transportation to get to Boston, whether ambulance or air; still being worked out. They will cover the radiation with rehabilitation, physician fee and bed at the Massachusetts General Hospital; Plan B is a go. He says they are still working on Plan A, which is the Spaulding Rehibilitation Centre.”Ok that’s great I tell him, Thank you.” He says he has been trying to get ahold of the team here to let them know what is in the works. He left a page for the oncologist and just received a email from the radiologist at Cheo. I thank him and tell him we will just hold still then. Not long after I hang up and the team here says we need to talk. We go to small room just inside the supply room and all sit. “Ok so what is your decision?” Our case worker bluntly puts it. I tell her I had just talked to Dr H. and he said the Plan B (Proton, Boston General, travel, Physio at hospital) has been approved and that he is trying to get ahold of them to work out arrangements. They all look at me a little surprised. It seems at this moment I have started directing the meeting. I ask the Oncologist once again if she feels the timing is ok but told the same that based on the protocol here it is 31 days post op. We leave with case worker working on paperwork and confirming details with Dr H., social worker will work on transportation. My husband and I stand in the hall for a brief but comforting hug. Is this really happening? Are we still going forward even without the top rehabilitation centre? Is this the answer I had prayed for? I told myself that everything would be covered if it was meant to be, does that mean Plan B?
At this point I feel like it is a good time to shower especially if we might be leaving today. I head to the Ronald McDonald House but no sooner do I get in the shower my phone starts beeping. It’s a text from Josh at 12:10 pm :
Josh: “Caseworker wants to know who said its approved
Me: Dr H
Josh: Caseworker said he hasn’t;t actually got approval yet, Just he applied
Me: He said plan b was approvel and they are putting in appeal for Plan A
Me: He talked to ministry at 8 am the ministy has approved the proton radiation the accommodations at the General Hospital the rehab team at Hospital and the Doctor fee and travel (plan b) There is a letter of appeal to the ministy to approve rehabilitation sent and travel which is plan a – it has been crazy, happy, scared and I dont know what else… did she talk to him? oh my god this is stupid…What is she saying
Josh: They don’t have approval yet, We can fly today if we pay but ministry says they won’t
Me: We need approval that he’s going to get Physio in the hospital atleast
Josh: So r we going to fly today??
Me: No not if its not covered. I just got out of the shower I will come over
Josh so wtf r we doing? K this is really hard cuz I don’t know what exactly is going on ppl are asking and I have no idea
Me: Ok I will Come Back”
During this conversation I also get a text from my brother who is visiting with my mom saying that I should get back there, Josh is losing it on the caseworker. Things could not get worst, all I need is my husband to get escorted out. This summersault of information is insane. I understand it is difficult with so many different people working on one thing but that does not make it any easier to accept. We had just come to terms with the idea of actually going and now we are thrown back again. As I am leaving the house I run into my brother and mother and go for lunch. During this time I call the caseworker to apologize and tell her to just contact me directly or talk to us together trying to elevate some pressure from her and stress from Josh. She says that sounds good and will keep working.
3:00pm…phone rings… its Boston. Dr.H says it looks like plan B is most likely. He says he sees the main issue is the approval of the ambulance service to and from the rehabilitation centre daily. Why would the Canadian Goverment fund an American ambulance service when Canada has perfectly good ministry regulated ambulances? The estimated cost of this is $24,000 for the 6 weeks. If this is the only road block should me and josh try to figure out how to fund it? Do we need to pay up front or can we get a bill and declare bankruptcy after? These are the thoughts that swirl in my head.
Dr. H and I also discussed the advantages of the proton therapy and although it is great Aiden really needs full rehabilitation; it is essential. It is doubtful that he would get as much as he is currently receiving at Cheo if staying at the Massachusetts General. I also ask about delaying treatment, he was suppose to start on the 21st this is now delaying 10 days; on the grand scheme should I really wait any longer? He says there was a round table debate for about 20 minutes on this exact topic and there is arguments for both sides but it should be taken into concideration especially in weighing the pros and cons of the better treatment and the rehabilitation. We end the conversation with the task of Josh and I deciding, if it comes down to it, will we scramble to come up with the ambulance cost; is this even at all feaseable? He asks that we have an answer by 4:30 pm so that when he calls back and this is the case we can decide then what the plan is.
More waiting… my aunt and uncle come for a visit and we hang out making jokes and getting Aiden to laugh and smile, which has become a regular pastime. The phone rings a bit past 4:30 pm, it is Dr. H. Ok so here it is… It’s all APPROVED! What? Wait a minute. Where is the but? No “but” he says, it’s all approved. The way they have worded the contract with the Ministry it covers Aiden for any care he needs in any affiliated hospital; which Spaulding is. I am actually speechless and the rest is a blur. I thank him profusely and hang up. I head back into Aiden’s room and the tears flow, even right now, writing this the tears are forming again. The air in the room is electric as I tell the news to Josh, Aiden and my aunt and uncle. Tears forming in all our eyes, except Aiden’s because he really does not get the significance. But HUGE smile when we say he will get to ride on a “jet plane!” I still can not believe it and I am sitting in Boston right now.
I do not want to get my hopes up yet and although I am ecstatic I will not believe it until I hear from our team here. I don’t think I can handle another ping pong game. It is just after 5pm and we still have not heard from this side. I send the caseworker an email “any word on Boston?” I am just about to go to the house to grab something to eat when I get a email back “yes give us 10” ..turn back around… “K we are in Sens Den” … Josh and I wait in den, our emotions running high. Josh and I are trying to be there for each other but it seems everything we say to each other is “getting lost in translation” .
Finally, the Caseworker and our interlink nurse (who has been a god send for my sanity) arrive. “It’s all Approved!” No beating around the bush. There is a little bit of paperwork to sign and we are ALL quite shocked. We are told Aidens case went to the top of the Canadian Health Chain there is a couple requirements such as flying Ornge Air; it has a full medical staff. They also tell us that the way the proposal was written it is for coverage at any affiliated hospital of Mass General (included Spaulding). We ask, when we will leave? She says most likely first thing Thursday morning she is working on that right now. Aiden has a 1 p.m appointment to start preparation of the Proton Radiation in Boston. We hug and thank purfusley, tears form.
The first thing I say when they leave is that I need to see Declan. I can’t go for 6 weeks and not say goodbye, that I love you and will miss you more then anything but we will be back soon. The thought of not being with Declan or Lynkon is devastating. Will Lynk even remember me? The balance of taking care of Aiden and spreading time with our other kids has been so difficult. I know Aiden needs us the most right now but Lynkon is only 1 and changing daily. I feel I am missing out on all the milestones that I merticulasly tracked with Aiden.
I am about to head over to the house again to pack up and go to my brothers to spend night with Declan when Josh texts me again… “Don’t go… you may be flying out tonight at 3 am!” I feel a twing of panic set in and instantly call my brother with no answer. I then call my best friend and in tears explain the need to see Declan. Without hesitation she is on her way to my brothers to pick up Declan and drive him down for the night. THANK YOU!
In the meantime, I pack up my suitcase and Aidens clothes. Luckily, I had the necessities already as I have lived at Cheo for over a month now. I am told that the Airplane is small to pack very Light! The Knapsack we had just received from Tomlinson came in VERY handy! A small over head suitcase, a childs Paw Patrol Case (we borrowed from Declan) and a Knapsack and we are as ready as can be for our 6 weeks. Declan gets there and we spend time cuddling and just hanging out and watching the clock. At around 9 (I think) we are told it will not be tonight as the plane is coming from Timmins and they would be over their hours for the day. It will hopefully be tomorrow unless something calls them away. We all spend the night in Aidens Hospital room that night.
In the morning, I wake early and get myself ready. I start to pack the room as much as I can to make it easier for Josh. He will need to clear out the hospital room as well as the Ronald McDonald room when we leave; and watch Declan at the same time (Thank you “L” for coming to help). Around 9 am they tell us the plane is on route should be around 10:30-11. They send all our passport information in (again). I play one last game of air hockey with Declan which had become a regular pastime. (I don’t even let declan win anymore he has gotten really good!) At around 12 pm transport shows up and it is more hugs and tears. Declan hugs me tight “I want to go with you!” Not understanding fully why he can not. After checking Aidens vitals and moving him to the Stretcher they seat belt him pretty tight. We all walk down the hall, holding on to every last moment that we can spend together. Finally we need to part ways. They put Aiden in the Ambulance first then I follow. The doors close and I can hear Declan’s cry. 6 weeks I tell myself, 6 weeks…
With some friendly small talk in the ambulance we get to the airport in no time. Aiden is full of smiles, I can see the excitement sparkle in his eyes. This is his first time in a plane, he has said for the last 2 years he wants to go in a jet plane, well it is finally happening. I think in our dream together of his first flight it was to a sandy beach or Disney Land but even so I can tell he is happy all things considering. The expression on his face when he see’s the orange plane (his favorite color) is priceless. And the feeling of watching him as we take off and I explain what is happening, I will hold forever. I tell him he is spoiled he gets a whole bed to stretch out on, on a commercial plane you are jammed in like a sardean. This small plane holds 2 pilots, 2 paramedics, Aiden and myself with not much room for anything else. It is pretty cool (all things considering, again). I see Aiden try to fight sleep as we fly through the clouds. I tell him sleeping is part of riding on a plane and a while later he drifts off.
A little more talk, the paramedics are very nice. The women paramedic is very interested in Aidens Story. She has worked for Ornge for 10 years and this is only her second time to the USA. She also has a son the same age and as I tell her the story I think I see her eyes well up a little. She gives me her business card when we arrive an hour and half later and timidly asks that I keep her updated if that’s ok. I say yes for sure I will email her the link to the blog. Once landed our passports are checked and then we are transported to another ambulance. This ambulance driver, I think his name was Jimmy, has the strongest Boston accent; a pure stereotype! I think, oh my gosh, will everyone sound like this? and whisper to Aiden about the accent, he gives a laugh.
A short ride and we arrive at the Massachusetts General Hospital. Going into the parking garage underground into what I think is the emergency room entrance, Panic sets in. All the anxiety I had pushed so far down is bubbling up and I start to feel sick and unable to focus. “Oh my god what have we done, what if this is the wrong choice, we are so far away from everyone” these thought race to my mind. The entrance is what I guess to be a small 12 x 12 room with 2 other stretchers and people on them as well as 9-11 people standing. It is hard to distinguish who is talking to who. A very tall man with dark hair and a calm voice approaches me “are you mom?” Yes I say and he introduces himself as Dr. H. He asks if I’m ok and I say Yes. I think he can read my face as they quickly say let’s get you through here, you had a long day we can do this upstairs. I follow down a long hall and peak into single bed rooms all along the hall, many empty. They remind me of tiny jail cells. We work our way to the elevator. The lady paramedic from the plane asks if I’m ok and I whisper I’m having a bit of a panic attack. She says not to worry it will be ok, or something along those lines to comfort me. We huddle into the elevator and up to the 17th floor. When the doors open we are greeted by a beautiful underwater scene. We are on the pediatric floor.
I follow close behind Aiden in the stretcher as we are led to our room. Seeing the nicely decorated family room and walking by the Ronald McDonald playroom my anxiety relaxes a bit more. Once in our room I relax even more, the view from our window is unbelievable! There is a whirlwind of meeting the team here and nurses and a lot of talking amongst the doctors and paramedics. “Dr. E” is the lead oncologist, he reminds me of a older, thinner doctor from the Cheers sitcom. I am introduced to “Dr. Y” who is the lead radiologist (Dr. H is her resident) she is dressed in business casual and looks like a blond 40 something soccer mom. The lead nurse reminds me exactly of Nurse Jackie, it makes me smile. There is a whirl wind of other doctors and nurses and who knows who else. And quite frankly the rest is a blur of test and questions and telling the whole story over and over again. One thing I do remember clear as day though is once Aiden was on his bed and a little settled I explain to him the view I started to raise his bed and the higher the bed got and the better view he got, his smile grew and grew! Amazing! We were finally here!
I would like to send a thank you to everyone at Cheo who helped with all the back and forth and paperwork; to the the team at Massachusetts General, especial Dr. H who was always right there with answers to question and never left me wondering to long; thank you to Ornge for flying us safely and making us feel safe. Thank you to our friends and family who helped in the move or there to be a listening ear when he where all over the place in emotions; thank you to the Canadian Health care system and whoever the Minister of Health is in Canada, no matter the outcome we know 100% we will never doubt that we have given Aiden the best possible chance.