Amazing update for an amazing day! The day started off right away in his chair, which he can sit in unassisted now, we took a stroll and went to family room where Aiden held the remote and flipped through channels. This may seem so tiny but such a milestone. First to close his hand and grip the remote, then to move a single thumb strong enough to push a button, none of which he could do the week prior (It must be all the thumb wrestling)!
Next triumph in our day was having a shower. The benefits of being at Spaulding really showed themselves, OT brought in a kid size shower chair! Everywhere we have been everything has been huge, made for adults. Commode that Aiden falls into or a huge tub that Aiden has no control in. OT assisted Aiden in getting undressed and from his wheel chair onto the shower chair where he could sit with feet on the ground for stability by himself (although I was ready for the catch at any moment). She then gave us tips to make it more comfortable and enjoyable, such as placing a facecloth over the shower head so it was not so strong. Aiden already was not a shower person so this made a difficult task even more so. He did great and transported back to wheelchair putting on his own shirt then back to bed to finish getting dressed and to snuggle under warm blanket.
A little after getting comfy in bed with a YouTube video he was pleasantly surprised by his grandparents who drove the 7 hours the night before to visit! His eyes lit up in what I thought to be surprise and joy at the same time!
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The hellos where short when Speech came to take Aiden to his next appointment (this was at 9am, pretty productive day already!) he transported back to the wheelchair. Everyday he is getting that much stronger at sitting up and then pushing himself with all his might to stand and take that one turning step to sit into the safety of his wheelchair. I stayed and chatted with my dad as Aiden went off with Speech. 45 mins later transport arrived to take us to the proton treatment center so I headed to Speech room. Approaching I expected to hear the usual moaning in pain and frustration and who knows what but it was quite. I entered room to see Aiden beaming with a craft he had made on his lap! Later I chatted with Speech who said he did great, less and less moaning. No more words but she is working with him on feeling comfortable with the routine and hopes once the Ng tube is out he will feel that much better and she will push him harder at speaking.
With so little choices Aiden can make these days asking him which toque he will wear has become our daily routine. Today he chose the orange Almonte one. With a quick transfer he was on stretcher and into ambulance on the way to the the Proton center, quite as a mouse but with smiles. After his treatment he woke up very good too, hardly any crys (the first time coming out from under he cryed/moaned for 2 hours which they say is very common with fossa syndrome). In recovery room the art therapist came in to see if Aiden wanted to do a craft; and he did! This was also a first there is so many things still very difficult for Aiden to do and it is a constant debate wether to even have him try something he use to love doing in fear that he can’t now and then gets upset and sad. He did great art therapy! she had white clay and Aiden picked a color from a pack of sharpies and held the marker in his hand to color on the clay. They would then mush the clay up and it would change the colour. I was shocked and even more so on the fact that he was holding he marker correctly and even better then he ever had befor his surgery!
Heading back to Spaulding, I could tell he was beyond exhausted. Within minutes of getting back into bed he was hocked up to over and feeding tube and vitales were checked. Within minutes of that the Pysio. came in as it was 3 in the afternoon and time for his next appointment. Back into the chair with hardley a whine and off to physiotheraphy. I had an appointment with the doctors about the following days and his surgery for the Gj tube, Broviac (like a iv put stitched in to his chest and also used to administer the Chemo later on ). He came back from pysio an hour later beaming! He had done another craft, a thanksgiving turkey with trace of his hand in different colours for the feathers. After all this he was ready for a nap and back into bed. I went over to visit with my dad and sue while he slept.
When I came back at 6:00 he was still soundly asleep and I debated waking him for a couple hour befor bed. I am glad I did because he got back into his chair and we went for a walk off the floor(another first). I showed him the pool and pictures on the wall of others “finding their strength”. Transitions from a wheel chair to walking again. Back upstairs we stopped my anothe room of a mom I had met and said Hi. Her 3 year old son had sesures from a young age and had just had surgery to remove half his brain to stop the seizures And his brain was rebuilding all the pathways again too. The boys watched The Good Dinosaur while the Mom and I chatted and drank Tea. A little while and I could see Aiden getting uncomfortable in his chair so we headed back to bed last transition for the day. I gave him a kiss on the forehead and told him how incredibly proud I was of him today and within minutes he was fast asleep. I looked at the clock 7:30 he was in his chair for an hour a new record!
I do not know what tomorrow will hold so I wanted to post this amazing update and celebrate
The Update
A lot has happened since arriving in Boston on the October 27th and today, November 3rd To summarize, we have seen every health care provider under the sun, Radiologits, Oncologists, Dentists, Gastroenterologists, Dietician, Psycologist, Nerologists, Doctors, Anesthesiologist, Nurses and many, many more that I can not remember. We have transferred to the Spaulding Rehabilitation Centre, we have had our radiation mask made and all the preparation now complete, we have had numourous CT Scans, MRI’s, Ultrasounds, Xrays, Blood Drawn, EKG’s, Swallow Tests and more. Everyone here has been terrific. I was able to get outside over the weekend and I must say Boston is BEAUTIFUL! Flying in I remarked how much water there was, I was quite surprised I never knew there was so much water in Boston and now I have learned is to part of the Atlantic Ocean. Out our window at Spaulding we can watch the cruise ships head off to Quebec and I am told in the summer they head to Bermuda. Watching the boats reminds me of growing up in the Country and hanging out at the locks. Although those boats seem tiny in comparison now; but alot of things seem tiny in comparison now.
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Never in a million years would I have imagined this life we are living. All the times I complained about life or thought I had the worst cold or flu in the world seem trivial. All the “stuff” I have accumulated over the years, decorating our home or buying toys for the kids or purchasing new clothes seems so unnecessary. I have now lived in one room with one small carry-on suitcase for 52 days now and although I still need my morning and afternoon coffee I do not miss much. I have been asked If I needed anything to keep me occupied, knitting, books, etc. But in the truth I have not had much time. Between appointments and getting up and ready and sneaking cuddles or a thumb wrestle with Aiden there really is not much free time.
This last week has been a challenge for both Aiden and myself. Getting into a new routine, meeting so many new people and being so far from our family and friends. Aiden has not said anything else but is getting better at his non-verbal communication. We are working with iPad Apps, cards, pointing, smiles we are trying it all. It is so hard to watch him like this. Looking through videos on my phone from the summer and seeing his chatty, vibrant self seems so long ago. I feel waves of sadness and disbelief wash over me and the thought of never getting back to that seems all to real.
Trying to take a picture of the “Thrush” thinking is Aiden saw it he might let me swap his mouth more… not happening
I met with the child physologist at Spaulding last week and we talked about Aidens personality before this, his “baseline”. I am told in cases of Posterior Fossa syndrome the baseline is usually hightened. For those who know Aiden, you may smile, you would know that he is already a very “Spirited Child”. The best description I think of is from our family doctor when Aiden was 4, she told us, “If he was a 30 year old CEO he would be extremely successful but unfortunately those skills are not sought out in Kindergarden. ” Aiden can light a room with his smile, witty jokes and inquisitive mind but he can also cause people to duck and cover with his roar. He is easily frustrated and can go from 1 to 100 and 100 to 1 in a flash. After speaking with the Physcologist (for over an hour) he asked if the school ever pushed for medication as it sounds like he could be on the tip of the “spectrum” (ausbergers), but very mild. He also talked about the negative effects and overuse of labeling a child with ADHD and the use of Ritalin which is over prescribed.
Prior to this meeting you could say I was on the depths of despair. The night before, I smothered myself in my pillow, muffling my cry. I could not get the image of him jumping off the dock, making crazy science experiments and telling us exaggerated tales out of my head. All I could see was him forever in a wheelchair unable to talk or walk. I felt so hopeless. This was the first time I had cried in 2 weeks; I felt like I was lossing my record, I felt guilt for this moment of weakness. The last week had been so challenging. Aiden had kept spiking a mysterious fever and had not been able to keep anything down. He just seemed so sick and miserable, rightly so. He would scream at the nurses and the rehabilitation team every time they tried to do something. Making it so difficult to tell if he was in pain or if this was his explosive personality coming out. I even had the fear that we were going to get kicked out of Spaulding because he was so sick and hard to work with. I was also told that he had gallstones and they were suggesting a G-tube; which is another surgery where they put a tube right into his stomach and feed him through that. I was scheduled to have a meeting with the pediatric surgeon on Friday. Aiden also has something they call thrush which is a yeast build up in his mouth and has to do swabs of a medicine 4 times a day. The morning meeting with the psychiatrist could not have been better timed. He told me that he has seen many cases like Aiden’s here. He said he should not say and can not promise but the general feeling is Aiden will WALK out of here in six weeks! I could not believe it when he said this. So many times I’ve told myself six weeks is not long enough, what can really happen in six weeks. Hearing him say this I felt disbelief but I started to feel hopeful again.
Little body warm against mine, bringing flashback of a little bundle and endless snuggles.
They say there is a plan to everything but this I do not see.
My fiery little conquer, once so bright with a shining spark now fading into illness.
Glimpse of his bright self seem fewer everyday.
If I could go back in time I would never put him down, never say just a second if I only I had known.
They says that I am strong, that they don’t know how I do it but I am not and I have to choice.
A gun up to my head, sink or swim, fight or wave the white flag.
Everyday there is something new and I know there is more to come.
To see another child ring the bell and tears stream down my face.
It is a sign of winning, of competition, but they look like they have lived a war.
A battle not meant for the weak but has no discrimination.
Battle scars, sunken eyes, shadows of themselves.
So we sit and watch the boats with bucket close in tow.
My extremities start to give, he is in not the tiny bundle anymore but one more minute does not seem long enough anymore. #longday #childhoodcancerawareness #medulloblastoma
Part 2: Stretchers, Planes and Ambulances
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.
Physiotherapist pep talk to Aiden on our last day.
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
Josh: ???
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.
Part 1: Getting Passports
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.
You would never guess he was sitting in a hospital bed with a feeding tube…kinda scary actually
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.
Email to Caseworker Tuesday night
Praying for Boston, and not the hockey team.
IT’S WEDNESDAY afternoon. My body aches as tension attacks. Internal dialogue continually plays in my head, preventing sleep from being a possibility. Then, finally, my cell phone rings, and I jump to answer. The invisible hands have grasped my throat once more as I see the 617 Massachusetts area code on my phone!
“Hi, yes, it’s Stephanie.” I nervously exclaim.
Dr H.’s deep voice explains the updated situation: “It looks like plan B is most likely to happen.” But, he continues, “The main issue is the approval of the ambulance service needed to go from Spaulding Rehabilitation Centre to Francis H. Burr Proton Therapy Centre at Mass General daily.”
“Why is this an issue?” I defeatedly ask.
Dr H explains, “The Canadian government has issues funding an American ambulance service when Canada has perfectly good ministry- regulated ambulances.”
I had taken my son Aiden into the Children’s Hospital of Eastern Ontario (CHEO) twenty-one days ago for what I had been told for months was “viral fatigue.” My active seven-year-old had been sleeping for endless hours throughout the day. He was starting to have difficulty walking and was on round-the-clock Tylenol for headaches and Gravol to try and combat the nausea that was overwhelming to his young body. An MRI showed a tumour the size of a plum in Aiden’s developing brain. Surgery was performed immediately to release the pressure, and soon after, we were told that the tumour was cancer. The cancer had spread like a serpent down his spine, and “bad guys” spotted his brain. On autopilot, I have survived with a smile on my face to show strength and safety to my beautiful boy. It has been a tornado of doctors, research, waiting, and praying. Waiting to know the next steps and praying for treatment in Boston. Treatment will give us hope for Aiden’s future, for our family’s future. Finally, I am on the phone with the doctor from Boston, but hope is not yet guaranteed.
I exhale at the thought that the potential to give my son the best chance at survival and long-term quality of life is coming down to money. I am told the estimated cost for six weeks of transportation is $24,000. I cannot even begin to comprehend how I would ever come up with this amount. The potential to win the lottery seems very unlikely as I have not left the hospital in twenty-one days to even buy a ticket. The internal dialogue starts up with frantic questions. Do we need to pay upfront? Can we get the treatment and then just declare bankruptcy after? The thoughts swirl in my head as Dr H discusses the advantages of proton therapy, which is not yet available in Canada.
Proton radiation is generally expected to provide equivalent tumour control as Photon radiation offered here in Canada. It is sought out because it has been shown to substantially reduce the long-term effects through its targeted approach. Because Aiden is only seven and still very much developing, a targeted approach could save him from hearing loss, infertility, and the one that hurts the most, loss of independent living.
My heart splinters at this thought. Aiden’s cancer, Medulloblastoma, is one of the most common malignant brain tumours of childhood, but I have been told he has the fourth subtype, which is the worst. Medulloblastoma occurs in the cerebellum, also known as the “small brain,” located at the bottom of the back of the head. The cerebellum is involved in many aspects of human behaviour and function, such as movement, speech and breathing.
Dr H and I end our conversation with him, letting me know he is about to head to a round table debate to argue that the proton radiation and extensive rehabilitation are equally needed for Aiden.
“Can you and Aiden’s Dad try to decide, if it comes down to it, are you able to cover the transportation costs? If you could have an answer by four-thirty when I call back, then we can decide what the plan is.”
The air escapes my lungs as I whisper “Yes” and hang up the phone. Is this even at all feasible? I start to pray for a miracle. I head back into Aiden’s hospital room, curling up beside his tiny warm body on the children’s hospital bed. He nuzzles into my arms lovingly. I want to go back twenty-one days, I want to hear Aiden’s voice again, and I want to get embraced in his hug. I make jokes and try to get Aiden to laugh and smile. This has become a regular pastime of trying to be a comic and get any response I can. I am told automatic functions will come back first with posterior fossa syndrome, which has been true.
The fifteen-hour surgery, a week prior, to remove as much cancer as possible has stolen my sons’ ability to walk or talk. The surgery has left Aiden with what is called Posterior Fossa Syndrome. Posterior Fossa Syndrome only develops in approximately 25% of children after the surgical resection, but I guess Aiden won the horrible disease lottery and has developed the most severe case. Aiden needs to beat this horrible disease and needs the extensive rehabilitation that Spaulding Rehabilitation Centre can offer him.
The phone rings a bit past four-thirty p.m.; I tell Aiden I will be right back and head out of the room into the empty hall. It is Dr H. “Okay, so here it is … It has all been approved!”
“What? Wait a minute. Where is the, but?” I burst into tears.
“No, but,” he says, “it’s all been 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 speechless. I thank him profusely and hang up. I head back into Aiden’s room, and the tears stream down my cheeks. The air in the room is electric as I tell Aiden and his Dad the fantastic news. Tears form in all our eyes, except Aiden’s, because he does not get the significance. I tell Aiden that he will get to ride on a “jet plane,” and a huge smile spreads across his face, and his eyes light up.
Although I am ecstatic, I self-talk myself down. I do not want to get my hopes up until I hear it from the oncology team at CHEO. I don’t think I can handle another ping-pong game. It is just after five-thirty, and I still have not heard from the team. I start to doubt my sanity as I send the caseworker an email, “Any word on Boston?” I don’t mention the conversation I had with Dr H earlier. I need to hear it for myself from this side. I put my phone away, it has been a long day, and I am depleted. I decided that I should probably eat something and start to head out of Aiden’s room. “Ding,” my phone chimes.
“Yes. Give us ten minutes and meet in the Sens Den.” Aiden is angelically asleep as his Dad and I head to the Sens Den, which is down the hall. Our emotions are running high. Aiden’s Dad and I are trying to be there for each other, but everything we say is getting lost in translation. Finally, the caseworker and interlink nurse, Marilyn, who has been a godsend for my sanity, arrives.
“It’s all been approved!” No beating around the bush. The words echo in my heart. “There is a little bit of paperwork to sign, and we are all quite shocked.” The caseworker continues, “We are told Aiden’s case went to the top of the Canadian health -care chain! There are a couple of requirements, such as flying Orange Air as it has a full medical staff, but everything looks good.”
I ask, “When we will leave?”
“Most likely, tomorrow morning, I am working on that piece right now. Aiden has a one p.m. appointment to prepare for the Proton Radiation in Boston on Friday.” I hug and thank Marilyn and the caseworker profusely; tears of relief and hope pour. We head back to Aiden’s room, and I tell his Dad in a panic that I need to see Declan before we go. The thought of not being with my other sons, Declan and Lynkon, is devastating. Lynkon is so tiny; will he even remember me? I try to balance it all but taking care of Aiden and trying to equally be there for our other boys has been an impossible feat. My friend brings Declan down to the hospital that night, and I fall asleep on the small cots with Declan in my arms.
I wake early; the sun is not up yet. I quietly get myself ready in the small bathroom next to Aiden’s bed, who sleeps peacefully. I start to pack as much as possible to make it easier for Aiden’s Dad. He will need to clear out the hospital and Ronald McDonald room when we leave. Our home for the last twenty-one days. I pack Aiden’s and my suitcase from the items we already have here. My phone rings at nine a.m., and I am told the plane is on the route and should be here around ten-thirty a.m. Declan sits with Aiden on his bed, showing him Pokémon cards as Aiden smiles. I look at the clock at twelve p.m.; my heart pounds profusely as a man for transport shows up and lifts Aiden to the stretcher. I hold Declan in my arms as he hugs me tight. “I want to go with you!” he cries on my shoulder. How can I explain to a five-year-old why he cannot come, why his mom is leaving him and why his brother is sick?
The transport man checks Aiden’s vitals one last time, and we all start to follow with sombre steps down the hall. I hold onto every moment we can all spend together, but we need to part ways. They lift the stretcher with Aiden strapped tightly onto the ambulance first. I follow and take a seat beside him. The doors of the ambulance close, and I can hear Declan’s piercing cry as I see him out the small window, engulfed in tears and in his dads’ arms.
I squeeze Aiden’s hand and mask my heart-wrenching pain with a reassuring smile to Aiden. Six weeks, I tell myself, six weeks, and this will all be a horrible dream we will wake up from and be back to normal.
#iHope
I was walking out of the hospital tonight and I noticed a sign I had walked past 1 million times before, it read #IHope. Some may read my posts and feel the awfulness of the situation, there is a lot of negativity, and it is pretty depressing but in the end I really do have Hope that this is going to end well. I realized it is so much easier to focus on negativity and it takes much more work to see the good in a situation, to see the light. We are so hard on ourselves, maybe we try something and are not the best or we feel like we could’ve done better on something; it is so hard to focus on the fact that we tried or that we completed something and be happy in that fact.
So many times Aiden would come home from school and say “I had a bad day” and it’s so easy to get sucked into this negativity. I would try to remind him:
“You did not have a bad DAY; something’s may have happen in your day that were not the greatest, make you sad or uncomfortable or angry but that does not make the whole day bad! Try focus on the good things in the day.
And as I remember this, I realize, I have not been taking my own advice. So here we go:
1. Aiden said another word! He said “I can’t!”. I was trying to brush his teeth and he and I were getting frustrated. He was growling at me so I gave him the toothbrush and said, “You do it! You brush your teeth!” In a muffled voice he said “I can’t!” We both froze and looked at each other, both surprised. I said “did you just say you can’t!” and he laughed with a huge smile. I told every doctor and nurse and anybody that would listen!
2. I recived an amazing message from someone that said, since hearing about Aiden she had gotten together with colleagues and put a package together for Aiden and his brothers. She called it “Project Aiden Smile”. To top it off, she said that when he gets out her and her colleagues want him (and brothers) to have a day where he can ride on any heavy machinery. If she does not have it, she will get it. I read him the message and he smiled ear to ear. My brother was in the room at the time and I looked over and he had reared up and I could tell they were happy tears. Not only is this a huge motivation for him but also the tug in our heart knowing that so many people are rooting for Aiden!
3. Today I talked with another mom whose son had the same cancer as Aiden. He went through the same surgery, he had mutism and needed rehabilitation to walk again. I talked to her for over two hours. We went back-and-forth on stories and it made me feel so good to know that I am not alone in the feelings I have been feeling. She also gave me a better understanding of what the condensed chemotherapy treatment would look like. Although our cases are different in many ways it was so good to hear another perspective – mom to mom
4. My brother sent me photos of Declan hanging out with his cousin. He had the hugest smile on his face and I could tell he was having a great time goofing around with his crazy cousin. I am so lucky to know that he is so well taken care of
5. I received another photo from my dad and stepmom who have been taking care of Lynkon. He was down at camp eating sand; just like the good ol’days of summer! I am so lucky to have had such an amazing summer with all my boys at camp. Catching fireflies, crazy paddle boat rides and a whole community in itself who are supporting us and praying for Aiden.
6. Even though we were put on isolation we still had lots of laughs. It was very comical to watch the physiotherapist, who always Insists Aiden has his running shoes on before he goes to the gym, get in the whole body draped outfit. Definitely not gym attire!
7. A friend visited yesterday and her son had found these Pokémon gym badges and thought they would be a great motivation for Aiden and his physiotherapy classes – kids know kids!
8. We have had endless amounts of people offer to help in anyway they can! Whether it’s cooking meals, financial help, organizing fundraisers, donating items, doing our laundry, being a listening ear, driving our boys, the list is endless. I have talked to some parents here who are from 8-9 hours away; we are so lucky to have an amazing community, friends, family and even strangers so close.
9. I received a message on the blog. It was from a teacher at Aiden school who had suggested a communication app called Clicker 7 to help him communicate. We have so many people working together to get Aiden better!
10. Even though Aiden has extensive rehabilitation in order to sit, walk and talk right now, I take hope in the fact that he is guaranteed to talk again! whether it is two days, a month, or year his speech will come back. Everyday he is getting stronger. There are some kids that come out of this surgery and are completely paralyzed or do not understand anything being said. We are so thankful Aiden understands every single word we are saying.
11. He is now ticklish! We can tickle him and make him laugh,
And finally,
12. Even though this has been extremely difficult, I still have a husband who loves me unconditionally and would do anything for his family. We may disagree at times, which I am sure most married couples do, but we know at the end of the day we are fighting for the same thing, to save Aiden
So everyday I am going to make a conscience effort to focus on the good things. #iHope that the more I focus on the good the less room there is for bad.
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