Cycle 6 finished successfully! There were a few hiccups however we made it home yesterday. As per normal we slept on and off for hours to recover from Mathew’s 9 days in the hospital.
The feeding tube made all the difference in the world this time. The pump fed him until Monday morning at which time it was disconnected and the bolus feeding training began. For some reason the tube coming out of his stomach is the shortest any of the nurses and doctors have seen so we had to wait for an extension to be sent up to the ward so the syringe feeding could begin and that didn’t happen until Monday. The tube is so short that it is easy to move it which causes Mathew unnecessary pain; he is in enough discomfort from the healing process as it is.
In this photo, taken with my iPhone, Mathew was resting in the hospital bed on Day 4 of chemo. It was in the morning and he looked awfully sweet.
John had a dreadful scare on Saturday evening with Mathew. On one of Mathew’s trips back from the bathroom to his bed he passed out and dropped to the floor. John yanked on the emergency call rope in the bathroom but no one came and he ended up yelling for help from the door. He said Mathew’s eyes rolled in his head!! Mathew also started vomiting while on the ground and wouldn’t let anyone help him up for several minutes. It seems that Mathew evacuating his bowels started a chain reaction that made him black out when he left the bathroom.
Fortunately it only happened the once but after that we hovered within an inch of him to catch Mathew if he fell again.
Mathew now has a new phobia to add to his other issues. Perhaps someone knows the correct name for this condition? Afraid to poop? With all the problems he’s experienced over the last 3 months he now is desperately afraid to use the bathroom. Did we really need this added to all the other difficulties? The feeding tube wasn’t enough? We are ALL going to need some therapy by the end of Mathew’s treatment!!
It isn’t all grim and bleak though. Mathew does have a black sense of humour which fits in with our current situation. On Sunday a snowstorm whipped through, the first big one of the winter. Due to the weather I drove up to Fredericton on Saturday to bring Kristen home from University. As we were going straight to the hospital I picked up a couple of pizzas to eat in the truck on the way back and to take any extra with me to eat on Sunday. The hospital cafeteria isn’t open on Sundays and I wasn’t sure if John would make it in or not. On Sunday while Mathew snoozed I rested on the cot and watched the hospital tv.
One time while I was checking on him I belched my diet Pepsi up. I figured, once it started, I might as well make it a good one to match the belching Mathew does during his tube feedings.
He laughed, “Mom! Is that from your pizza?!”
“No dear,” I replied, “That is from my diet Pepsi”.
“You have diet Pepsi over there with your pizza?
“Yes dear,” I answered.
“WHAT?” he cried, “Let me get this straight; you are having a party over there, watching Christmas movies, eating pizza and drinking pop while I am over here sick from my cancer treatment?
“Afraid so dear ~ but you forgot I also have chips too!”
(Next is said indignantly while rolling his eyes) “This is so totally not fair!”
Who knew hanging out in the hospital on a snowy day could be so relaxing?
On another evening near the end of this cycle, Mathew’s urine output didn’t match his input. Every shift the nurses hang a tally sheet and they calculate how much i.v. fluids are flushed in plus any liquids that Mathew drinks. Every bathroom break is measured and the two are measured against each other. If there is much of a difference then it indicates that fluid is being retained in the body. This can happen with chemo and the fluid can hang around the lungs and make life miserable. On this night the difference was two litres and so a drug, a diuretic, was hung to flush the fluids out. It worked. Mathew peed out 2 litres in ONE hour! The rate greatly decreased through the night but John didn’t get much rest (poor fellow he was there for everything this cycle!).
Kristen decided to make a scale model of the Mathew’s tumour, then and now.
Whoever coined the phrase a picture is worth a thousand words wasn’t kidding ~ check this out:
Based on the report following the CT scan last week and the measurements of the tumour in September and again last week, the red blob is the “before” tumour and the itty-bitty green blob is the “after” tumour. Isn’t that awesome? Significantly reduced – you go, chemo! KILL IT! KILL IT ALL!!
Thank you Kristen for the visual interpretation in those great Christmas colours (and your onesie. It’s kind of cute…). Best Christmas gift ever
Now, about that snowstorm on Sunday.
I did a bit of yard decorating for Christmas. Since we removed the big xmas-type bush beside the front window this summer, I decided to expand our lighted animal collection. Last year we had Snoopy, the kitty and the palm trees. Last year we spent every day picking them back up after the wind constantly knocked everything over. This year we staked everything into place and built Snoopy up a little so you could see him after the snow fell. Last year he got buried.
Sometimes I have to learn mistakes the same way…again and again. The pig was my late addition this year and I tossed him out there right before the snowstorm. I’m quite fond of him and would actually like to SEE him!
This little tree is called Kristen’s tree because it was outfitted in pink (her favourite colour). Even the lights on the tree are pink. I wanted the Kitty by this tree because it lights up pink (and is “her” ornament) but the plugs didn’t work out.
Here is the palm trees from last year and this year’s addition, the pink flamingo. That bird is for John who would rather be anywhere warm right now. Jolly good thing the flamingo came prepared for winter with his hat and scarf:
Snoopy is still chilling with Woodstock this year; this is the guy that started it all! I bought him for Mathew last year. The kitty lost an ear in the garage over the winter…if you see it will you help it come home? The pig is the latest addition that I HAD to buy when Mathew and I checked out a brand new store which just opened in Saint John, Target. He was in his wheelchair, so couldn’t do anything but protest bitterly when I wheeled him into my favourite section (all that dazzle and glitter bothers him) and spotted that marvelous pig.
Now no one better say that pig represents ME ‘kay? I just happened to like the happy, round guy. First one that makes any noise that pig and I are related won’t be seen again until the snow melts in spring (get my drift?)
I felt bad for that little pig, all buried up to his eyeballs in snow. Kristen saved him though. She trudged through the snow and tramped it down so the pig shines forth once again.
Yeah…did I mention another snowstorm is passing through right now? Methinks the little, pink pig is buried again.
Next year all the animals will be moved up onto a platform. This is the land of snow and plenty of it, some years!
Kristen poses at the edge of our property with Jasmine. Jasmine loves, loves, LOVES the snow. She’ll charge out the door and start pushing her nose happily through it and eating it just like kids do. Her allergies go away in the winter basically as soon as the snow flies. It makes her feel better and with her coat she can handle the cold and snow much better than our Pug. Who, you notice, isn’t in the picture. He’s scratching at the door wanting back in.
Now that we’re home the plan is for Mathew to drink 3-4 cans of Ensure a day and supplement the rest through the Bolus feeds. If that doesn’t work however then I’ll be uber-busy pushing his liquid meals through the syringes. It takes quite a while to safely get one full can into his stomach so he doesn’t throw it back up. It can take an hour or more actually.
His last bloodwork was all great except his Hemoglobin was at 91. If it stays there or goes up that will keep him from getting another transfusion (which is my goal). He is looking pale again but he is still so much better than in the last couple of months. It is horrifying how sick he was without taking in any food. I will gladly sit by his bed and pump in all 7 bottles if I have to, just to keep him healthier and better able to recover from his chemo.