Lovingheart

The other chairs I have had in the past, pull out into a proper, solid, little cot.  As I said, the one have now is a recliner.  Last night, I sat on the edge and promptly landed on my butt.  It was just the leg rest.  I was laughing but my laughter was not disturbing Marlon as it took him a long time to fall asleep.  Can't say I slept too well either.  Eventually, after one of the night interruptions, Marlon asked me to sleep in his bed.  I think we both slept better.  Still plenty of interruptions.  Several times the nurse asked Marlon to pee so she could send off a sample.  They did one chemo at 5 and had hoped to start the 24 hour one at 6, but his urine wasn't at the proper PH, so it was eventually started at 9. Marlon is handling it pretty well so far.  Better than last time but we will see what the night is like.  He hasn't had much exercise but we are paying attention to his mobility, and I keep reminding him to stretch...

Just in case anyone was wondering the call about the credit card being compromised was a spam call. We made it to the hospital this morning and Marlon's blood levels were fine.  I expected them to be.  But a while later, we were told there may not be a bed available for Marlon, so we may have to go home and come back another day.  About an hour later, we were told there was a bed so off we went.  And for the most part, that is where Marlon spent his day.  Sitting in a chair in front of the computer.  Just as I was about to get him to go for a walkabout, a friend came on and asked about playing Minecraft.  This evening he played with various people.  Last, was with his brother.  I like that they can still connect even if they aren't in the same town. Chemo starts early in the morning.  Overnight though, he gets liquids and sodium bicarb (yes, baking soda).  This gets the PH of his urine to a high enough level to start the chemo. Norm...

Two early morning phone calls today.  I ignored the first but answered the second.  I knew what it was going to be.  My visa card was compromised.  Ya right!  I wonder.  'oh here, let me tell you all the information about my two visa cards so you can help me out.'. But so frustrating.  At least it has been about a week since the last call.  There was a week, where we had one a day, always early.  This morning was a bit hectic, as Paco slept in, and was rushing around to get to work.  Since he didn't have enough time to walk, he was going to drive but the car door was frozen. We got it open and he made it to work on time. Some people need their morning coffee, Marlon needs his morning minecraft.  I did manage to get some food into him first but he is extra grumpy until he has had some time. Linsy and I went into Guelph and Marlon stayed home with Thomas.  When we got home, Linsy went over to meet the puppy.  Marlon went wit...

The big highlight of today was meeting our landlady's new puppy.  So nice to hang with a young one.  Shortly after our visit, Marlon was ready to go back again and I was saying we'll end up hanging out on their doorstep waiting for a chance to see the puppy.  So sweet. Otherwise, we did spend some time outside and Marlon made a small snowman.  He said it is snowball packing snow, but not so good for snowmen.  This evening with Paco and Linsy in the front seat, and Marlon and I in the back, we drove to Georgetown to see some Christmas lights. I like the way the lighting turned out. The first place we went to was https://www.lambertslights.com/ Though nothing else had the fancy music and performance, there were still some wonderful decorations.  Amazing the work and effort that goes into these projects.

While Marlon doesn't stay outside too long, I am always happy to see his energy.  He paces back and forth, sometimes 'harassing' me, sometimes telling his stories in his head.  Grateful for those quiet days at home.  I feel the muscles again from hauling wood.   Because of the way the day worked, Paco and Marlon didn't play Minecraft together until later this evening.  It was nice to hear though.  Marlon laughing and the two of them chattering away.  Marlon did get time with minecraft friends earlier so he did have a good day. He got a calligraphy kit for Christmas. Hoping to see more...

Minecraft and books and other things here and there.  Marlon made a paper airplane with a new kit he got and was impressed with it.  He has made many airplanes and this one was different enough to be impressive.  Paco and I worked in the woods with a tree he and his dad cut down yesterday.  I feel my muscles.  Kind of a nice soreness, unlike Marlon's muscle pain.  Once again, last week's experience has strengthened my confidence in Marlon's complete healing.  Perhaps a bumpy road but all of our journeys have plenty of bumps along the way. Marlon was in pretty good spirits all day, until after he had a hot chocolate this evening.  Until that time, he had a very minor sick feeling that came and went.  After the drink, he felt very bad.  Maybe not the best thing for him right now. The other day Thomas pointed out to us a piece of wood that Paco had tried to split.  He managed to get four wedges jammed into it and still the wood didn't ...

What a picture-perfect Christmas! It was after 1130 by the time Marlon fell asleep last night, but he was still in good spirits today.  We don't rush into the presents but sure had a lot under and around our tree.  I splurged on wrapping paper, feeling guilty for the waste, but decided it might be fun to have an assortment of boxes.  There was nothing too fancy but it looked like a lot.  Gloves, socks, pyjamas, practical things plus some others. Paco is good at stacking so I gave him the challenge of besting 'Santa's' pile, the one on the right which is under 5 feet.  Looks like he got it to 7 feet but it didn't last too long. Marlon was happy with it all and got several special presents.  Here he is reading a minecraft book with his gifts. In the afternoon, we spent some time outside in the woods but Marlon still doesn't have much stamina to be on his feet too long so he came in.  Couldn't have been nicer out there. We had a nice turkey dinner togethe...

Glad to be home for Christmas.  Glad we are healthy, all things considered.  So much to be grateful for. My sister Olivia stopped by today with some Christmas presents and Jamey's mashed potatoes.  For both Thanksgiving and New year's day, Marlon looks forward to uncle Jamey's potatoes.  Marlon's special present for dinner tonight. We had another friend also stop by bringing crafts and gifts from her kids.  Really we have already been so blessed with so many kind gestures and gifts.  It is all a little overwhelming.  As I said, so much to be grateful for. Marlon was able to walk to the mailbox today.  Wonderful how fast the pain has healed.  He still feels it, but not that gripping, uncontrollable pain. This evening, we had a family zoom call.  Some discussion of the last time they were at home for Christmas.  My sister Moira, who has lived in Montreal for decades, figures she has never spent Christmas at home.  For my sister O...

On the bright side, there is nothing seriously wrong with Marlon.  It looks like he has muscles seizing up in his back and these are causing all sorts of pain and discomfort.  A relief to know and also frustrating.  I knew it was nothing serious, but at first, had no idea what.  Even though Thomas was talking about muscle pain in ribs, that didn't sound right enough.  And either way, three hours of writhing, crying pain needs some kind of help. He had an EKG.  He mostly slept through it and today was wondering what those weird stickers on his chest were.  The nurse did take some off until he started to wake. In the night, they even gave him a torso CAT scan.  He was being wheeled to the room in a bed, mostly asleep. He sat up with a start and had an 'episode' where the pain had him screaming and writhing again.  The tears and pleading in his eyes were hard to see.  Eventually, they gave him fentanyl for the pain. All of the tests showed ...

An early day for hospital visit.  Marlon was grumpy to wake up.  Hospital, finger poke, all good, home… Marlon climbs the stairs into the porch, sits down in the chair, and starts complaining.  His lungs really hurt.  The bottom of his ribs and it hurts to breathe.  He is crying and sweating from the pain.  So uncomfortable.   'Every time I take a breath my stomach explodes. It reincarnates and then explodes again!' I call hospital and, while waiting for a callback, we keep trying to make him comfortable.  Finally, he calms down, lying on his left side, Once the pain is gone, he had breakfast and went on the computer.  Since he was playing with friends, I let him stay on longer than I normally would have.   Around 4, we walk to the mailbox, and Marlon said it hurts.  It hurts to breathe.  His abdomen hurts.  We get back to the house and he is in extreme pain.  It hurts to breathe and he is practically hyperv...

I see that, for the most part, Marlon doesn't need me around as much.  He is content to do his own thing and listen to or read books or go on the computer.  When he is feeling well anyway.  This morning, Linsy had a dentist appointment, so I left Marlon at home, dropped Linsy off, and went to the post office.  While there I saw my friend Kim, and we walked for a while.  So nice to do something out of the blue and different.  While we were gone, Marlon was on the computer.  In the afternoon, Linsy and I went to Guelph together.  Marlon went outside with his dad (didn't stay out too long), did school, and of course, when I came home he was on the computer. Paco, Marlon, and I went together to pick Linsy up from work this evening.  Paco drove and, all wearing our Christmas hats, we followed a route around town looking at Christmas lights and drinking hot chocolate.   Pretty impressive displays.  A nice way to end the day.

Nice to wake up in our own bed.  I think Marlon slept well.  A lot of the day was spent on the computer, but not even close to his usage at the hospital. We did a little more decorating around here today.  Marlon is a bit more cheeky, sometimes in a playful way.  Nice and frustrating.  Can't complain! We were looking at something in front of the computer together, and Marlon was banging his fist against his forehead.  I said 'Hey, stop hitting me!'.  When I was lying beside him at bedtime, he took my first and banged it into his forehead. I said 'Hey, don't hit yourself.  Be nice to you!'. He said, 'You're hitting me!'. Not sure what this head hitting is.  I have seen it a few times. This evening, Paco was on his phone by the fire. I was there heating milk for chocolate. Marlon was in his chair, listening to his book, and drawing.  Next thing, he says 'throw up', grabs the container nearby, and throws up. He hasn't been feeling great all...

  Marlon didn't wake up as much in the night and didn't sleep in as much in the morning.  When he woke up he was gagging.  There was an irritation at the back of his throat and he has a sensitive gag reflex.  One of the side effects of this chemo can be mouth sores.  He gagged a bit and did eventually throw up this morning due in big part to the irritation.  He did eat a small breakfast afterward.  No more diarrhea. Because of the diarrhea, they have to send a sample off for testing.  While waiting on a test result, Marlon is in isolation.  That means he can't use the washroom, and I can't use the kitchen.  By midday yesterday, we got ½ the results back.  By the time we left today, we still hadn't heard the second half.  Marlon uses the commode in the room but luckily I am still allowed to use the washroom. This morning, the nurse brought us water.  Four styrofoam cups with four straws.  I bring my own mugs and cups s...

Even though we were up several times in the night, I feel I slept better.  We both slept in until after 8 which is an accomplishment at the hospital.  Marlon did have to get to several times for more diarrhea.  His bum is pretty sensitive.  Luckily, by the end of the day, his bowels have eased up. Even before this hospital visit, when Marlon was feeling well, his appetite was only so-so.  He didn't really care about eating.  With treatment, and him not feeling well, he is even more inclined to not eat or want to.  Today he did eat some but much of it was me feeding him. Marlon is recovering from this treatment fairly well so far.  We will see how it continues.  When we were called to come into the hospital we were told it could be a week.  Then we were told likely it would be Monday that he could go home (after 4 days/5 nights).  Today we were told that if all goes well, Marlon will be cleared Saturday night.   If he is to...

What a long day.  Marlon was noticing yesterday, that just being admitted to the hospital makes him feel sick. I think today was probably record-breaking for the amount of time spent on the laptop.  Not great, but distraction.  First part of the day he was NPO (no food or drink), so I let him have distraction for that.  He was sedated, had the procedure, and then once he was awake again, wanted time to help get rid of the grogginess (he's got an excuse for everything).  I went and got him pita pit (currently preferred over subway which he has for supper last night).  He did get off the computer for a while, read and then listened to book.  Next thing I know he is back on the computer again.  I let him be, and went for a walk.  Then mostly on for the rest of the day, though I did get him off for a while. The high dose chemo was started midday and this is dripped slowly in over 24 hours.  He is feeling it.  Didn't eat supper.  Ha...

  I take that back Let the break continue.  Oh please. No, not more chemo.  The call comes to have Marlon go back to the hospital and my system screams NO!  He is feeling fine.  He is good.  Why do we have to subject him to more pain and suffering and sickness??  Oh, how I would just love to walk away from this.  His leukemia is pretty much gone, but in the past, if they stop treatment at this time, it all comes right back.  But, but, but….  He is fine.  But maybe he isn't?!?  We don't know but just in case.  Argh This was my reaction this morning when the call came to come to the hospital today for checkup and admission.  I have calmed down and am going with the flow. We signed up for the study.  There is the chance we stay in the standard stream, which is more intense.  The other option is another treatment they are trying (not such a new one anymore), that is less intense.  If I had a choice, I (we ...

As wonderful as it is to have this break from chemo, I feel it would have been nice to know it would last so long.  I could have gone back to work for a few weeks.  I feel I could have used this time more wisely.  Perhaps it sounds as if I am complaining. Far from it, it is good.  But I ask myself, what have I accomplished! Not as much as I could have, and yet I see how much I have to be grateful for. I am so grateful.  I feel the heat in the house, the pinging of the woodstove.  I look over and see Paco and Linsy quietly doing their own thing.  Comfort. Marlon and I packed up some of the chocolates we made.  No easy task to organize and tell them apart.  Just not organized enough.  We tried, and hopefully succeeded.  Fun, fun. Marlon didn't want to be outside in the cold too much today. Hopefully, he will get used to it, and we can convince him to be out more. Two heads, one hat

Good thing I didn't get too worked up about the possibilities of this week's hospital appointments.  Continued days of freedom. Linsy had a dentist appointment this morning.  By midday, when I still hadn't heard from the hospital about tomorrow, I messaged nurse Judy.  She didn't know, she emailed the doctor.  Later in the afternoon, I heard they still don't know what is happening and what to expect.  Maybe Wednesday or Thursday or Friday…  Something, someday. We haven't had a Tuesday at home in a long time.   The way Marlon is bouncing around, energetic, full of life and mischief, it has hard to believe he is anything other than a completely healthy, young boy.

Both Paco and Linsy were off at work today.  Marlon was on the computer and then started working on a craft, while listening to a new audiobook.  We made a batch of chocolate.  Thomas, Marlon, and I went outside.  The boys shot their slingshots, while I carried wood out of the woods.  Nice to traipse through the woods.   After lunch, Marlon and I made more chocolates.   Skor bits, mint, and plain. Marlon went back on the computer, and when Paco came home, we carried wood to the steps.  Marlon finished his craft in the evening.  Thanks Diana. Looks like Marlon's broken mug was from a 1976 promotion (McD's I think).  So now a collector's item.  Maybe not worth $20 for one or $50 for a set of 4.  I looked to see if I could find a glass mug to potentially become a new favourite and didn't find the right one.  He likes glass mugs with a handle rather than ceramic ones.  Maybe I just get him an emoji mug and see i...

This morning as I was taking Marlon's breakfast out of the toaster oven, the baking sheet that was on top fell off.  On the way down, the sheet knocked Marlon's water glass onto the floor where it shattered.  He saw this and was so very upset.  He cried and cried.  So many tears, so upset that I wondered if he was crying for more than just the mug.  It was a special one to him.  He picked it out a few years ago at the salvation army store.  A Garfield glass mug.  Marlon has liked Garfield for a long time, still does, and this mug was his. After breakfast, we did head to the Guelph farmer's market.  Just before leaving, we got a message from Marlon's friend wondering if he would like to stop by to do some crafts. So we ran some errands, Marlon and I saw his friend and mom.  By the time we got home, we had been out 6 hours.  Marlon was fine and jumped right on the computer.  An uneventful evening.  Now to see if I can find a...

A peaceful, quiet, non-descript kind of day.  Marlon read, and listened and drew, and hung out on the computer.  He was in pretty good spirits.  Sometimes though, he is plain rude and snappy with me.  I feel he is trying to prove something.  I don't quite know how to react.  I suppose I should say more than I do.  Rudeness because he is sick or uncomfortable or in pain is more acceptable.  Being rude just because, is not ok.  Now I must clarify this is not a regular, constant thing. And not really worse than teenagers can be. This afternoon, we drove Thomas to pick up the car (they were in for service and tire switching today).  Marlon wanted to make an extra stop while we were out, so he ran into the health food store to get a decently healthy snack bar that he enjoys.  I stayed in the car and he was happy to do something a little extra.  Though she knows Marlon, I am not sure if Louisa, the owner of the store, recognized him....

Philadelphia chromosome-positive ALL is the kind of leukemia Marlon has.  When the marrow is tested, the basic ALL test comes back first.   Another week or so later, the PH+ test results come back.  Marlon will take part in a study if his test results continue to portray him as low-risk (very favourable response to treatment thus far).  Considering his last results showed him as low-risk, we expect the same. The study has two different streams of treatment.  One, the old, more aggressive way, and the other, less aggressive chemo, with different drugs. The stream a person is in is randomized, and will not be decided until his participation in the study is confirmed Regardless of which stream, Marlon continues to take this one pill he has been on almost since the beginning.  This is one that targets the PH+ of the leukemia.  As little as 20 years ago, the PH+ was not so easily cured, but now, the success rate is much higher. On Tuesday, I was also told o...

After our Tuesday hospital appointment, I feel like the weekend is here.  My days get so mixed up.  I keep feeling like it is Thursday or Friday.  Enjoy the days! I told Linsy I would drive her to school this morning and then ran into Sobeys to grab a couple of things.  Never a very quick run by the time I stop and chat.  When I came back Marlon was minecrafting with a friend.  Barely even finished breakfast.  I was told to go look at the pool. The melting snow and ice and the water flows created a neat circle. Paco had his second exam today.   Marion is at loose ends.  He is getting bored more and more.  When he is bored he just wants to go on the computer.  We walked to the mailbox together.  Being such a  wet day he didn't want to stay out long.  I hope he finds some inspiration. Linsy worked the afternoon and after supper, we played a game of euchre with Marlon/Paco versus Thomas and I.  Picked Linsy up ...

I should have known not to get too caught up in what may or may not happen with treatment.   We got to the hospital and went to finger poke.  Last week's marrow pull shows very good initial results.  Pretty clear.  Marlon's blood counts are good and getting better.  Until they receive the in-depth results, testing the Philadelphia+, there is still no treatment.  It is very promising that the results will be 'low risk', at which time Marlon can be signed up for the study, and then we will find out the next course of treatment. Until then, more time for Marlon to feel good and just be. I was told that he will likely be admitted for a couple of days.  They are hoping to have results by Friday, and he will be admitted on Monday to begin treatment Tuesday.  If so, I will stay with him. We'll see. Marlon has been saying we won't bother getting a Christmas tree this year.  The teenagers don't really care and he didn't feel like it is worth the ...

Marlon was anxious to get on the computer by 9 this morning.  I made him hold off.  Today, Paco had his first final exam for this semester.  Once he went upstairs to get to it, I let Marlon get on.  Shortly after he got off, we got a message from a friend. He was hoping to meet up with Marlon on minecraft.  These two have been talking about meeting up for a while.  So, he went back on the computer and played minecraft again.  I left to head into Guelph and run errands.  I believe he got off not long after I left, but when I came home a few hours later, he was on the computer again! While I was out Linsy sent me a picture that made me laugh. If I didn't know better, I would think Mojo intentionally antagonizes Linsy in competing for her chair.  When she isn't here, he doesn't have much interest in it.  When she is here, he often steals her chair from her.  He will lie on a chair nearby and the minute she gets up he jumps for the stea...

Last night at bedtime, Marlon told me he wasn't sure he wanted to do the 3D workshop he was scheduled for today.  He couldn't say why.  This morning, he confirmed he would rather stay home today so that is what we did.  Both Thomas and I noticed that, for the past couple of days, Marlon has seemed a little bit off.  Not sick, just different.  Not something I can explain. We went outside.  Thomas and Paco cut wood, I hauled it, and Marlon hung out.  Linsy was at work.  Marion said he wanted to go in, I said stay out a little bit more.  Then he wasn't around.  I had my suspicions, looked at my phone, and confirmed he had found Josephine, our landlady.  In the past, Marlon has enjoyed hanging out with her but hasn't in a while.  He watched a movie at her place.  I am glad he had a chance to see her for a while.   This afternoon Marlon and I made more chocolate.  We keep experimenting and trying to get it right....

We seem to be back in the market routine.  Saturday morning and that is what Marlon and I did.  We were both impressed with a drumming busker before we got in line to enter the market.    Shortly after we got home, I left to pick up Linsy from work, and then we were going to head out as I had registered Marlon for a workshop.  Luckily I noticed before we left, that I had the day wrong, and this workshop is tomorrow.  We went outside for a while.  I helped Thomas collect cedar to fix up a log bridge we made.  We will be pulling wood-filled sleds over it when we have more snow. Marlon wasn't outside too long and when I came in he was chatting away, playing Minecraft with others. This evening, Marlon and I were playing a game together (Blokus), and he wanted to quit to go to bed.  He was tired and wanted time to read his book in bed. I notice concern on my part for the upcoming hospital visit on Tuesday.  It has been 4 weeks with littl...

Mid-morning, Thomas mentioned the snow was quite heavy.  So I told Marlon it was time to play in the snow. I started splitting kindling and he made a big snowball.  He was going to make a snowman but by the time I helped him to move a big ball as far as he wanted (no small task pushing it), he just enjoyed shaping and climbing on it.   He got computer time and I made lunch.  Later in the afternoon, we got notification a package had arrived. We went looking for it.  Our mail carrier, Jody, had already dropped something off, so Marlon and I went for a walk.  Not at our landlord's main door.  We went to the mailbox.  No, it wasn't there.  We did find it at another entrance to our landlord's house.  After this Marlon was tired and needed a rest.  He was a lower energy today.  He did get minecraft time with friends, had supper, we made more chocolate (with the cacao butter that was delivered today), and we played a game of euch...