Lovingheart

Later in the afternoon, Marlon and I went out for a quick walk.  He suggested just a short walk before he goes on the computer.  We saw Josephine, Jordan, and Stella in the field so we joined them.  Just before we saw them we were marveling at the fog and I was saying we should see how far apart we could go before losing sight.  As it turned out, we did go for a decent walk in the field, never lost sight of each other but the house disappeared in the fog.  It was so nice and tranquil, made better watching the dog bounding this way and that through the snow. Marlon was feeling fine all day until he went to brush his teeth before bed.  He came back to his chair and sat with his container for a long while feeling close to throwing up.  Then he sat and read for a while so had a later bedtime but he didn't throw up.  Phew! While drawing this morning, he was laughing and laughing at the proportions, feeling it was all way off.

I mentioned to Marlon that he is back to hospital on Tuesday and he said he had been wondering.  This last break has been a nice long one. We have been watching the snowman leaning a little more every day.  Today his head fell off.  Watching gravity and warmth and slushy, icy snow in motion. Thomas and I were cutting and moving some wood today and Marlon actually helped out a little bit.  Normally he disappears rather than doing anything.

I can see that when I do finally go back to work, Marlon will be prepared to deal with it.  He appreciates having me here when needed but his need is less, the better he feels.  Treatment starts up again next week and there is still not enough consistency for me to be scheduled for work.  I guess we'll see how this next round of treatment has him feeling. This afternoon we took Josephine's dog, Stella, for a walk.  She doesn't feel comfortable with us yet and would much rather be with mom or dad, Pat, but if we stop by regularly when Josephine is at work, she will get used to us and maybe even want to play. Linsy received her blood donor card in the mail today and found out her blood type is B negative, the second most rare.  Marlon is B positive.  I am AB positive and when I first started donating blood it was the second most rare blood type.  Good to know!

I went into Guelph today and Marlon stayed home.  Even though it was such a nice day, I don't think we spent enough time outside.  I am trying to get him to have time without audiobooks and this evening he was crying at the thought of going several days without.  He wouldn't know what to do.  Really he has so many things he could be doing and that is why I want him to take a break. Even if he just sits and reads a book instead of listening that is a bit better. We have been watching the snowman lean way over and are very surprised it hasn't fallen over yet.  This is the one that was leaning too much one way and while trying to fix it, I knocked the head off.  New head but sharp lean

Yesterday, Marlon wanted to make cookies but we didn't get around to it.  Today, it took several tries before we got around to it.  Always something else happening with one of us.  But we did make chocolate chip cookies in the afternoon.  Before that, Marlon made another snowman that he had fun smashing to the ground. He showed me today's picture.   He asked what I thought inspired this picture.  I said Curious George and he reacted with a no way, Mary Poppins.  I was surprised and asked him if he knew what book I was listening to.  No, he didn't.  Home Work by Julie Andrews.  In this book, she talks of her roles in movies.  

A feeling of melancholy.  Things come and go and change and we all have our struggles.  Sometimes we are there and present and sometimes we want to hide away.  I don't really know where I am.  The days go by with highs and lows.  I thought of calling my mom today as I was sorting through cameras (of all things).  I have four old cameras, two of which are from my mom.  All hands-me-downs.  But of course, I can't call her on the telephone. I ran a couple of errands in town this morning and bought pita pit for Marlon for lunch.  He took a bite, gave me that 'I feel sick' look, and I realized one more favoured food item has been retired.  Especially sad, as it has been one of his favourite restaurant meals for years.  Who knows if he will go back to that. He did get homemade chili and yellow rice for dinner and was very happy with that saying it is his favourite meal that I make.  Will it change?  Always does. This writing for...

Great packing snow today.  Finally made a good snowman.  Marlon put a decent amount of work into it and I helped out, especially to lift the body parts onto the base. The leaning picture on the left is what happened after we went inside.  We fixed it up and did some sledding.  Marlon thought the snow would be too sticky to slide properly but it was pretty good. Later on, we got Paco out to put size in perspective.  At this time the snowman had a lean in the other direction. I tried to fix the lean and decapitated the snowman.   Marlon felt very sick this evening and it was touch and go for quite a while and to whether supper would stay down.  It did, and he went to bed dreaming of eating cookies tomorrow.

Paco has finished his reading week and is back to classes in the morning.  Marlon appreciates any extra time he gets with his brother. Did a Sunday morning thing and made pancakes.  Haven't done that in quite a while.  Played darts with Marlon again.  I am not a good player but was having better luck than him and he was getting very frustrated.  Then he got an overall high score and was very happy to brag and gloat of his success.  He is not a very good winner or loser.  I think it is an age thing where winning is so important.  It is easy from my vantage point (old) to see and feel the fun is in the game and not the outcome. The turkeys have been out wandering around the past couple of days.  I like the way their tracks make arrows that point the opposite direction they are going. He is running out of ideas on drawings.  I got a laugh out of this character.

It was a close call, but Marlon made it through the day without throwing up. He built up a Lego set. We played darts with the kid-safe board he got.  We went sledding.  He enjoyed digging in the snow to see how far down the grass is. He is getting good mileage out of his new RC car.  It isn't the fastest when outside with lots of space but inside it is plenty fast and flips and bounces and is amusing.

Marlon was happy to open the rest of his presents this morning.  He also got some time with Paco playing darts and then minecraft.   I went sledding with Marlon again.  Good exercise trudging through the deep snow. Last night we dropped the car off at the mechanics.  The brake line needed replacing which brought up the discussion of fixing it versus writing it off.  The car is over 10 years old, mileage over 200,000, and the power steering may not last much longer.  We still need the car so paid the $750 to get the brakes fixed. This evening I played with Marlon and one of his new games.  At first, he was getting frustrated because he didn't understand it.  Then we figured it out and he was happy with it. He had a great continuation of his birthday and made it through the day without throwing up.  Phew When he was a baby, Marlon was given a sleeper that said 'I love my blue car' and then we got a blue car.  With talk of said car, th...

Who'da thunk that if the hand brake light stays on, it could mean the 'foot' brakes are malfunctioning.  Several years ago we were having an issue with the car's clutch (manual transmission).  It was during the cold of the winter and the mechanic said weird things happen to cars during prolonged cold.  So a couple of weeks ago when the hand brake light stayed on, I didn't really think too much of it.  It's pretty cold, we'll see. I took Marlon to Guelph today to have a masked, cupcake decorating visit with a friend.  While he was there I ran errands.  Finishing up the last stop, I noticed the brake pedal went all the way to the floor.  Yikes.  Not good.  Add snow on top of weak brakes and it was a nerve-wracking drive home. Funny enough, our mechanic, Kevin, called this morning to wish Marlon a happy birthday (Marlon has been in his classes).  I called him tonight when I got home and joked that he hacked our car while on the phone. Oh we...

Marlon was outside a bit and he came to ask me if I thought it would be alright if he did some sledding.  Sledding, skating, and most sports are not things Marlon can participate in during treatment.  Knowing the mild slopes we have around here I told him I thought it would be ok.  He did a little and in the afternoon on our way to the mailbox, we did some more.  Small, gentle slopes are the way to go.  Not too fast or dangerous but still fun.   He gets short bursts of energy but they don't last long and then he needs time to recover. He didn't take any anti-nausea medication tonight and he felt fine when he went to bed.  Grateful to have a day with very little nausea.

I spent a good part of the morning on the phone or chats.  We were supposed to have something delivered last Wednesday and we are still waiting.  Frustrating.  Years ago, Thomas stopped ordering from a particular company because the only way they shipped was through Purolator and our address causes them too much confusion. I have also been looking for some files from 2000 and am wondering if I don't have them after all.  Had me thinking about how easy it is to save things these days.  It may not always be a good thing if we stop to consider the environmental aspect of saving everything in the 'cloud' but sure is convenient. While we were outside today, Marlon dug a spot for himself in the snow. In the afternoon, he got a headstart to the mailbox and I told him I would beat him so he ran.  He is more of a sprinter than a distance runner but it is so nice to see he can run again.  Not much stamina and he did feel exhausted afterward but he can do it....

Happy Family Day I am grateful we are here together.  I like to see them sitting at the table working on their own things. You can't see him but even the cat is there on the chair with the white cover. Later in the afternoon, Linsy and I went out to do a drive-by for her friend's birthday.  While out, we picked up pizza as per Marlon's request. Marlon and I were playing two-handed euchre but then Linsy was interested in playing so we got Paco to play with us as well.  Thomas was watching for a while but I don't know a 5-handed version.  Before the game was over, Marlon was feeling pretty bad and nauseous so we quit.  He didn't end up throwing up. Small victories! His 11th birthday is Thursday and he is counting down the days.  Such an odd time for birthdays but it is good he is excited. 

Happy Valentine's! This morning Marlon made me an origami heart. An average day.  Sometimes I think he uses not feeling well as an excuse.  Like today we were going out to stack wood and I told him to come out.  He said he wasn't feeling well.  Eventually, he did come out and seemed just fine but only stayed out for about 5 minutes. Paco played minecraft with Marlon and his friends.  When Marlon gets excited he bangs his feet on the floor.  Linsy has said he is going to end up in the basement or at least wear a hole in the carpet. Last week, I introduced him to the song 'Psycho Chicken'.  He plays it again and again.  Even made a drawing for it. He didn't make it through the day without throwing up.  Bedtime event again.  I am thinking to give him anti-nausea medication late afternoon for the next week and see if that makes a difference.  By the time he mentions it, it is too late.

Definitely time to recover from the chemo.  Full of ups and downs.  On the bright side, the downs aren't as low as they were yesterday.  He had times where he was feeling ok and then he was feeling pretty bad and nauseous.  He didn't throw up and did manage to eat three smaller meals. A friend messaged us that she and her son Luke dropped something in the mailbox for Marlon.  That gave him the motivation to walk to the road.  He didn't feel well enough to try the cookies but did later on this evening and enjoyed two of them. Had a call with my siblings this evening and Marlon hung out with us. An origami bird.  The picture doesn't do it justice.  Looks like a hummingbird.  I tried to make one too and he laughed at mine.  Not as good as his

I keep forgetting that just because they finished injecting the chemo doesn't mean the effects are done.  The side effects keep on going. Marlon woke up around 7 and started throwing up.  Irritation around the gag reflex.  In the evening, the nurse said he would need to send urine for testing at 1 and 5 am.  I asked him if we could at least skip the 1am one.  Luckily he skipped both.  Even though he is getting a constant 150ml/hour liquids dripped in, Marlon is good to sleep through the night.  After his pee, he dozed off for a little bit.  Very unusual. He threw up several more times even though he didn't drink or eat anything at all.  He felt rough all day.   Luckily though, the methotrexate cleared early so he was able to leave the hospital an hour earlier than anticipated.  We were home by 430.  He was still feeling sick the whole way home and didn't perk up until getting inside and seeing his Kiwico box, containing a ...

This is the first methotrexate visit where Marlon didn't wake up in the morning and throw up from irritation at the back of his mouth.  He is feeling icky most of the time but overall it went well.  With any luck, we will be home for supper Friday night. He continues to get liquids and sodium bicarb and also a drug to clear the methotrexate from his system. We did some drawing wars again.  First one Marlon said a button so that is what I did Not what he had in mind.  He was thinking 'don't touch the red button Different perceptions. Marlon had his echocardiogram today.  An excuse to get him to go for a little walk and within half an hour he was done.  Just a routine procedure, not because there is a concern.

They had hoped to get Marlon started on the chemo at 6 this morning.  It ended up being 10 by the time his urine had the right PH level of 7 to start it. A slow drip for 24 hours. This is the colour of this one.  His urine is bright. He was on and off the computer.  When he gets off, how bad he is feeling, comes to the forefront.  Nauseous and just plain icky.  He is flushed and his eyes bloodshot.  The eyes could be from the dry atmosphere or being on the computer too much. The Child Life Specialists were handing out heart-shaped cookies and supplies to decorate the Valentine treats today.  Marlon decorated and then ate his.   Last night we had the whole space (split room with 4 beds) to ourselves.  This evening a teenager is on the other side of the curtain.  Lots of patients on the ward of varying ages but I haven't heard as much crying.  Perhaps I shouldn't push my luck and say this when we still have two more nights.

When we pulled up to the hospital this morning, I was struck by strong emotion.  Not dread or fear.  Emotion, maybe there was some dread, some sadness.  Here we go again.  I guess that was my indicator he would be admitted today.  His neutrophils were 0.9 and they needed to be 0.75 to proceed with treatment.  Marlon was happy to be finally getting this last admission started.  Last admission is nowhere near the end of treatment but after this next step, all treatments can be done during outpatient clinic visits. He had the day free and we walked around some and he was on the computer a fair bit.  He was to be accessed after 8 pm.  He became emotional beforehand.  He wants a normal life.  I pointed out there are no normal lives right now.  He said a life without chemo.  He is right, that would be nice.  Some tears, he recovered and the nurse came to poke his skin.  He had a patch on which relieves the pain of the ...