Although it is 2:30 am, early Saturday morning and another late-nighter, this one isn’t so bad. That is because Mathew and I crashed and burned Thursday night.

After getting a whole hour’s sleep Wednesday night and not being able to sleep at all on Thursday I was fried by 8 pm. Unfortunately Mathew had another couple of meltdowns, the last being at midnight. John got up and took over since I could barely put one foot in front of the other. I fell asleep before my head hit the pillow. Mathew soon followed suit, complements of his sleeping pill.

We both slept until 4 pm on Friday. That’s 16 hours for me – give or take bathroom breaks. Mathew was finally woken up at 4 pm otherwise he’d probably still be asleep! Now he is bushy-tailed and bright-eyed. At the moment he is taking a bath even though it is 2:30 am.

I started napping again by 10pm and would still be sleeping now, except I like to keep an ear out when he is the tub. His mobility issues and overall fatigue can cause sudden issues that need immediate attention. Getting out of the bathtub isn’t a time or place you want to see him slip or fall. He isn’t ready to use the bathing chair yet. I use that as a measure of how mobile he is so I’m pleased he can still enjoy baths.

His pain level has gone back to normal, which means just break-through medication now and then but not that all-encompassing pain he had earlier this week. Family have popped by for visits this week which lifted Mathew’s spirits considerably.

The nightly scary movies are alive and well. Mathew relishes picking out something to watch each night. Yesterday it was “Cabin Fever” and tonight it was a subtitled foreign movie about an apartment building whose occupants come down with a mysterious virus and the whole building is placed in quarantine. There is a sequel which is lined up for tomorrow’s (today’s?) viewing pleasure. Oh joy. The night before “Cabin Fever” was “The Blair Witch Project”. So we are covering everything this month of Halloween. It makes up a bit for the party he isn’t having this year.

After placing the phone calls to the Thoracic Surgeon and the Oncologist on Wednesday I heard nothing back from either doctor’s office by Friday so I called the Surgeon’s office back. Apparently the best time to call is around 9 am which is when the doctors seem to come in. This is the second time an office assistant caught the doctor as he came in. Dr. Johnston decided to look at Mathew’s scans closer and talk to his Oncologist so his secretary called me later Friday with an update. He won’t be doing the lung surgery so no appointment needed to see Dr. Johnston.

That leaves us waiting on the Oncologist. I expect we might hear something next week. Nothing happens quickly for us; two years ago we went through the same hurry up and wait scenario when Mathew was first diagnosed. It can be frustrating but I understand these doctors have so many patients that extra time is a joke. Between Dr. Burnell seeing her patients, making hospital rounds, attending her meetings with various departments and studying her patients’ needs via charts, etc, I wonder if she ever goes home. Knowing her she will explore and decide on the next option before calling us back.

Friday evening I told Mathew about the phone call from Dr. Johnston’s office. Cue another meltdown. Even though it is what was expected the thought of more chemo is really rough on him. It is almost impossible to try to reason with Mathew about likely scenarios.  He is worried about getting so very sick again. I reassured him we have come so far from those first months of treatment; that we know much better how to deal with any side effects that might occur. Two years ago everything was so new and overwhelming PLUS he won’t receive the 5-chemo drug cocktail again. Or the radiation. His body will probably laugh off any new chemo as though it were a joke after that last protocol.

That’s the latest update about Mathew’s situation. He is seeing a psychiatrist on Tuesday, at the Regional Hospital. I am hoping for a review of his medications and also to find a new prescription that will help keep him calmer. As I explained to Mathew this evening, I want both him and us to stay safe when he gets news he doesn’t like. Right now he isn’t coping well and we are constantly concerned about his well-being and ours when he flies off the handle in fear and rage.

We will also be going back to the psychologist . He is working with Mathew, teaching him coping strategies and with us…showing us how to parent given difficult circumstances. As much as I’m unhappy about getting professional help…AGAIN… I, personally, have already had an *AHA* moment or two out the sessions. The family dynamic, already buckling under the difficulty of a special needs adult (Mathew is 22), was breaking with Mathew’s cancer diagnosis and ongoing testing & treatment. Mathew wasn’t born with a handy-dandy guide on how to raise a diverse and er…interesting child, so we’ve searched out help before when life was getting difficult.

It isn’t something I like talking about and I wish we weren’t in a situation where we needed more help but here we are. The professionals are in a delicate situation where they help us but to do so…kind of have to show us where things are going wrong. It isn’t pretty when you realize how derailed your parenting and “people” techniques and skills are. You become humbled quickly when everything is stripped down and better building blocks are the tools by which you hope to improve relationships between family members. It isn’t for the faint of heart and you have to be willing to want to learn and change.

All that aside, let’s get back to DISNEYWORLD!!

The first day: TRAVELLING TO ORLANDO.

To get from our home near Saint John, New Brunswick (Canada) to Orlando, we wanted the most direct travel arrangements possible. Ideally a direct flight without worrying about customs. We decided to drive across the border to Bangor, Maine and fly “Allegiant”. The direct flight was set out to be about 3 hours or so. By driving across the border any customs’ delays wouldn’t affect travelling plans (meaning we wouldn’t miss a connecting flight, etc). It still meant a long day especially for Mathew. The drive from our home to Bangor is about 3-1/2 hours. We headed out in the morning to catch our 4:30 pm flight.

Our niece stayed in our home for the week looking after our animals and home. I didn’t want to board our old dog anymore. She is a ‘fraidy-dog and now that Bosco has gone to doggy heaven a kennel stay would send her over the edge. She was much happier at home, in familiar surroundings and with Spook, our old cat. Spook is always home and a family member usually pops in daily to feed him and give him some attention when we are away. With our niece living here the animals looked disappointed upon our return. I think she spoiled them! It was a great peace of mind for me at least, and I didn’t worry about them at all.

We took off about 9:30 am and headed south to the border. The road is single lane and windy once you cross into Maine. It is a country route with some scenic areas but mostly it’s a “are-we-there-yet?” kind of drive. We arrived in Bangor around 1pm giving us time to eat lunch and go to the bookstore to pick up a novel or two for easy reading. We still arrived at the airport in plenty of time to catch the flight.

Mathew’s wheelchair came with us. When it became obvious a few months ago that his mobility was an issue once again, rather than waiting to rent another wheelchair from the Red Cross we decided to purchase our own. I went to a medical supply company and discussed Mathew’s needs (along with weight, size, etc) and picked out the wheelchair that best suited its transportation purpose. The wheelchair cost $800 but I received a 20% discount…don’t remember why. It’s sturdy at approximately 50 lbs and is a beast to lift into the truck. It is comfortable for Mathew and is now an indispensable piece of equipment to get him out and about.

So Mathew had his own wheels right up to the plane’s door. At that time airport staff took his wheelchair and any other passenger’s mobility vehicles (carts, baby buggies, etc) down to the airplane’s cargo hold. Then, once the plane arrives at its destination, the same items are brought to the plane’s door again for when the passengers disembark.

We are usually one of the first to board the plane because of the wheelchair. Allegiant Air is a barebones airline so while the airfare cost much less than anything flying out of Canada, it wasn’t the most comfortable of rides. The seats are tight together, leg room is rather squishy and the seats do not recline at all. I forgot to give Mathew any Ativan (gee, that’s a first. Usually I overdose him!) and the flight was miserable for him. He was in agony by the time we reached Orlando even with all the extra pain medication we gave him.

Once we arrived at the airport we set off to get our reserved vehicle. It was quite a walk out of the airport and over to the discounted rental agency…and the mugginess hit us immediately. It was around 11 pm by the time we collected our luggage and shuffled over to collect the minivan.

Then we had to drive an hour or so to our accommodations. At night. Exhausted. In the dark. With cranky everybody. On toll roads galore. Our saving grace was the lack of traffic; all sane people were home sleeping. We brought our GPS with us and it guided us to our destination on the south side of Orlando. We flew in to Sanford, which is a town north of Orlando. It’s a nice, small airport but quite a drive from Summer Bay resort where our rented condo waited for us.

When we finally reached Summer Bay and found our condo we were pleasantly surprised. We ended up with a 3 bedroom condo for the week. It was great! Kristen and Mathew each had their own room with a queen-sized bed with a big tv and a ceiling fan. Kristen’s room had a bathtub in it. There was a full bathroom with shower off the hallway serving as the main bathroom. Our huge room also boasted a tv plus a Jacuzzi in the room itself and a full attached ensuite. The condo was fully equipped with a complete kitchen, dining/living room and a washer/dryer! Summer Bay came recommended to us by various coworkers who also vacationed there while staying in Orlando. From what I gather it is a timeshare resort but extra weeks are sold at a discount. There is a website you can go to and occasionally certificates for a week’s stay go on sale. You buy the certificate (equals a week’s stay) and then check the site’s calendar for availability. We bought our ticket for $230 US. You read that right. A week’s stay in a 3 bedroom, lovely condo with AIR-CONDITIONING for $230!!

The resort has several pools and immaculate grounds. There is a grocery store just off the grounds. Kristen spent her free time at the pools enjoying the sun & water. It is a cash-free site, meaning you use a card that bills whatever you want to your condo. Kristen could order drinks or food at the pool; something John and I did the few times we went there with her. Usually we were conked out back at the condo, exhausted.

There isn’t convenient transportation from the resort, however and I don’t believe there was public bussing. There were special buses going from the resort to the theme parks; leaving early in the morning and returning in the evening. We never used those because Mathew’s energy and pain level were unpredictable.

Soooo….once we got to the condo John and Kristen went off to the aforementioned grocery store for breakfast food. Mathew and I stayed behind at the condo and that is when I discovered I’d left a piece of my luggage at the airport.

It was my fault and karma gave me a swift kick in the rear. When we were still at the Sanford airport collecting our luggage, a piece kept going by that Kristen insisted was ours. Too tired to do simple math I was less than polite telling her that absolutely, 100% was not OURS so stop!!    Yup…it was mine. It had all my underthings, my pajamas, bathing suit and the books we bought at the Bangor bookstore. At the time I thought it also had all of my clothes too.

Once I realized this I gave up and went straight to bed. I was so exhausted that there wasn’t anything productive I could do so sleeping was the best alternative I could think of. Mathew told John and Kristen what happened when they got back and John called the airport. Of course the luggage was there but it was so far away we just had them hold the piece until we arrived the following Saturday to fly home. I did apologize to Kristen the next day. I went to Walmart to replace the forgotten items the next morning. Fortunately while juggling suitcases, weight allowances and room, most of my actual clothing got moved over to John’s duffle bag while packing. I was so happy to see my favourite clothing articles! It was the rest of the stuff I dearly missed for the week.

So ends the first day of our Orlando vacation.

Kristen in Disneyworld.

Kristen in Disneyworld.

See? We actually make to there!

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