What a lovely week we had. How dreadful it is over already and it is back to reality.

You can see the marks left from the tape and needle over his port

You can see the marks left from the tape and needle over his port

Mathew is scheduled to be admitted at 5pm today and we will spend the day packing, cleaning and grocery shopping. This week will be too hectic to want to do anything but go to the hospital.

Mathew bounced back to his old self beautifully and by yesterday he was off his liquid diet and back to eating solid food! It was marvellous giving him real food to munch on. There was just one incident of vomiting but it was a doozy. On Thursday he let loose with all the liquid he drank probably from him just drinking too much in a short period of time. What a mess on the floor! It just kept coming and coming; I was amazed at the quantity. No wonder he barfed! He felt much better after and later got back to eating without a problem.

Relaxing in bed with his favourite pastime; his iPad mini

Relaxing in bed with his favourite pastime; his iPad mini

There were a couple of excursions throughout the week in spite of the lousy weather. There was a blizzard warning one day however it mostly missed us so the kids had a free day off from school again. The weather was due about noon and onwards however it never showed its pointy teeth except for some wind. Nova Scotia, our bordering province to the East however, was nailed by the howling winds and blowing snow. Over here very mild spells of temperatures pop in long enough to create havoc with snow and rain before the thermometer plunges again, freezing all that water back to ice.

Mathew enjoyed his outings to his favourite stores and I appreciated there weren’t stampedes of people to pass along winter germs. Knock on wood we’ve managed to avoid any colds or flu mostly because we avoid people as much as possible. Mathew found some DVDs and a few anime books he likes to read for when he is feeling much better. He had started reading his books in earnest late last spring so it was disappointing that habit stopped when he fell so ill.

Resting in the morning

Resting in the morning

While organizing his cancer binder over the week I discovered his special authorization for his drugs from the Province has either expired or is about to. The Province authorized 6 cycles only of his supporting care drugs even though 13 cycles was the ordered treatment plan. So Mathew just starting his 8th cycle means I have to liaise with the benefits coordinator hastily tomorrow and not only get that straightened out but also send in request for his radiation drugs. The Province’s authorization only covered a certain number of pills (the minimum) per cycle but now Mathew is on them non-stop. I hate this bloody paperwork. In the first months of daze and confusion, scrambling to make sense and understand all the appointments, drugs, etc, this was easy to overlook. With the additional hospitalizations Mathew had and our exhaustion, who knew to keep this information front and centre? Surely the Province doesn’t believe the doctors and Mathew would conspire for him to continue all these drugs past his treatment? The government was given his protocol at the start, from the doctor, so now we have to submit everything again for a few more rounds of drugs? This is where I start to lose it folks. It becomes all the paperwork, all the time. Mathew’s files fill binders from when he was a youngster and we desperately sought out specialist after specialist looking for help with our child, seeking guidance and insight into his disabilities and how to help him. It took until he was 12 years old to get any help or diagnosis from anyone and even then there wasn’t a significant improvement until he turned 16 and the pediatric neurologist diagnosed him as being bipolar and Mathew was put on medication that finally, FINALLY improved our lives substantially. The paperwork didn’t stop there either ~ there were appointments with Social Development (Welfare Services?) once he turned 18 and became an adult, according to the state. More appointments to diagnose his mental disabilities and recognize him as severely disabled and more paperwork for funding and placement at Key Industries.

Barely a breather from all those years and then the poor fellow gets hit with cancer and now there is all that additional paperwork and appointments… since he is incapable of managing it at all, it falls on us. I’m so, so tired of the paperwork and the seemingly endless requests for just a little bit more, can you confirm it is still necessary? type of crap.

I hate putting Mathew back where he is going to sink back into sickness again, this time with radiation for that extra oomph to knock him off his feet. We are grateful for the week and that Mathew’s mood and well-being came back readily; it gives us hope our lives will get back to a new normal when this is over. Barring no unseen complications Mathew should be able to return to Key Industries and his friends, once the rest and recovery is done… whenever that is. We haven’t brought up surgery and we won’t until the chemo and radiation is done.

The daily hospital runs for radiation throughout our lousy winter is what I’m dreading. By all accounts radiation’s overriding side effect is fatigue. That, combined with the fatigue from chemo and Mathew’s natural “slooooow” to move tendencies…well, this should be fun. *sigh*

The colour scheme in Mathew's bedroom

The colour scheme in Mathew’s bedroom

As the week progressed Mathew spent more time in his chair, watching tv and playing his games. We watched movies together and he didn’t need his frequent daily naps. We didn’t visit with family because everyone is sick with colds or those all too-familiar symptoms and no one wants to pass anything along.

The wall mural in Mathew's room

The wall mural in Mathew’s room

With Mathew being admitted tonight and not having that ER nightmare to start the week off, perhaps I won’t get as exhausted this time. I didn’t get any sleep that first night the last time and I probably never recovered the lost time. Mathew will probably be released next Saturday from the hospital; we’ve learned to keep him there for the extra night to run the fluids through him.

This is the view from Mathew's bedroom window

This is the view from Mathew’s bedroom window

Now, where to find that monstrous suitcase that carries all of his necessities plus his pillow and his comforter…??

A pensive moment

A pensive moment

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