Lovingheart

I am getting the sense of things calming down.  I have time.  What a concept. There are always things to do but I have just sat more.  Not something I typically do much of.  When it is like this, I feel I should be working. And then I look at the inconsistencies of the treatment and I understand why they recommend being available until treatment reaches the maintenance stage.  How he reacts to each stage of treatment and how well he bounces back varies.  He may be feeling ok and have energy but his blood counts show he is still dealing with the onslaught of the chemo.  They wait until the body starts to recover and then blast it again.  Not fun but what do I know?! I am lucky enough to have not been exposed to much cancer in my immediate circle until now.   I am being taught to take things as they come.  And if necessary, change direction.  And there is always so much to be grateful for. I had to strain to read what Marlon wrot...

I went into Guelph this morning and Marlon stayed home with Thomas and did his own thing.  Some computer time, some book time, and who knows what all. Yesterday, Chris, the tree guy that sometimes hangs out on the property, cleared snow off a pond and flooded it.   This afternoon, Marlon and I went down and scooted around on the ice, sliding back and forth.  After I picked up Linsy from work, she and I put on our skates.  Marlon stayed in his boots.  Not quite ready to skate yet.  A gorgeous day to spend some time outside. This is a video of some fun on the ice https://photos.app.goo.gl/K3rGRPgWQpqAFhBcA A peaceful evening.  I can tell he hasn't had chemo for a couple of weeks as his appetite is good and he is eating a variety of foods and keeping them down.  It is a steady climb back to a proper appetite.

Louise picked us up this morning to go to the hospital.  She would wait around today just in case.  We were waiting for almost an hour and a half and I was getting quite frustrated thinking of Louise waiting around just to go home alone. Finally, almost two hours after finger poke, we were told Marlon's counts were too low again (neuts were 0.6).  Come back on Tuesday.  So by 2pm, we were back home again.  At least Louise didn't wait in vain. I have not been known to be too good at changing direction and rearranging plans but I sure have been getting a lot of practice this past while. Marlon has been wanting to get this last hospital stay out of the way.  Understandably so. Paco played connect 4 with Marlon this evening.  Marlon was laughing so hard as he won again and again.  He's pretty tricky.  Paco did get a few wins in but not many. In this picture, the person has found pure air in the mountains

Sunday, the 31st, is the 5-month anniversary of Marlon's diagnosis.  It feels we have been living this way for so long that it is hard to believe it has only been 5 months.  So much has happened and changed in that time that it feels like it must be much longer. Today Marlon was jumping and rolling over the snowbank and I am so grateful he can move normally again.  Then again after doing that and then walking to the mailbox, he was exhausted and had a hard time completing the walk home.  We played Connect 4 today and managed the challenging task of a tie.  Marlon was disappointed not to win but I was excited we had finally filled the board with no wins. Back to the hospital in the morning.

Not surprisingly after last night's sickness, Marlon woke up hungry this morning.  He ate well today and kept his food down.  He wanted to snack more in the evening but I held him back a little, feeling nervous of the nausea. We made chocolate chip cookies today. He came for a walk with me.  We meandered along the stream and through the woods. It was a nice walk except for his incessant complaining.

Louise was to come pick Marlon and I up at 10 this morning.  When we saw how fast the snow was getting pretty bad we agreed earlier.  I picked up my phone to message earlier to Louise and saw her question asking what I was thinking.  The visibility was poor, roads were messy and slow.  It took quite a bit longer.  Louise was just going to head straight back home as Marlon was to be admitted.  Shortly after getting upstairs, Judy came waving the paper saying his neutrophil counts were too low to continue with treatment.  Unfortunately, Louise was gone by the time she saw that.  Jane looked into getting us into Ronald McDonald house for a night but they aren't doing short-term stays right now.  I did not want Louise to come back to pick us up so I looked into bus or train and was just about to book a Lyft ride when Louise called and said she was driving back to pick us up.  I felt so bad she had to do that when the roads were so bad. ...

We have our travel connect 4 packed up to bring to the hospital since that seems to be the game of the day.  Marlon wanted to play several times today.  He also went outside a few times.  Once he was planning on staying out a bit longer but came in after a short time with his back hurting. It didn't hurt long. I wonder if he ever learns anything while listening to Paco's courses.  Here, he was actually watching Paco's work but commented on the prof's Pink Panther tie. Just had a good laugh.  Linsy stood up to show me something and Mojo immediately jumped onto her chair.  Even though he has his comfy chair, he wants hers. When I was getting supper together, my eye was itchy but I was not rubbing it because it has been sore lately.  I looked at it and have popped a blood vessel.  It looks horrible.  Kids are telling me not to look at them.  I look creepy.  I think my thyroid is acting up. Marlon was feeling pretty nauseous this evenin...

Another smooth day.  Marlon worked on the project by himself without needing me there.  Maybe as he sees it coming together he will feel more motivated. I had an audiobook from the library that grabbed my attention and was a very good listen.  Written by a Canadian too!  Resilience is Futile, by Julie S Lalonde.  I didn't know what to expect but was impressed.   Marlon and I ended the day with connect 4 again.  I think he won more than me.  I remember playing with him when he was sick, before his diagnosis, and I felt bad because he just wasn't on the ball and kept losing. Just another example of how much better he is.  

Feels like a long day! I went to Guelph in the morning.  When I came home midday, we had lunch and I helped Marlon work on a craft he got for Christmas a year ago.  Slow going.  He's not terribly motivated to overcome challenges or work through things.  Or even to learn how things work.  I know darn well where he gets that trait from.  Frustrating to see in myself and my kids.  I managed to get him to go for a walk with me this afternoon.  That was frustrating too, because he was resisting going any distance.  Just one of those days!  We all have them. The day ended on a good note. Marlon and I played connect 4.  A fun game to play because losses and wins are balanced.

Day before yesterday, Marlon wanted me to buy him something blueberry pastry-ish for breakfast.  I didn't but instead made blueberry muffins.  Too much moisture and blueberries so they were a little off but still tasty.  He decided today we would make blueberry cookies since the best part was the topping.  Marlon called the dough cement but amazingly they turned out pretty good. This evening, the five of us played cards.  Six if you include Mojo but he was just there for the lap.  Sitting in such a way that he looked every bit as fat as Marlon portrayed him in yesterday's drawing  Right now he is enjoying my lap as I sit and write this.  Marlon felt much better this evening. There are so many variables to keep in mind to help him feel well.  Sometimes it works.

I believe it was the day that Elvis Presley died that I was flying across the Atlantic, with a big tag around my neck with two letters on it, UA.  Unaccompanied Minor.  I had just turned 11 the month before.  The stewardesses were all nice to me.  I am guessing Franz, Lisl, and Franzi met me at the airport.  Straight off, we were going to Tulnerbach, and I felt a sense of excitement, wondering what this place was, and what we would do.  We made a stop along the way and Onkel Franz and Franzi went into the store while Tante Lisl and I stayed by the Volkswagen van.  She smoked a lot.  Right after her cigarette, she would pop a mint in her mouth.  I don't remember her being friendly or even really making an effort.  I didn't speak German and they didn't speak much English.  Little did I realize Tulnerbach was the 'cottage' and we would spend a lot of time there.  A big, cold, dark building of which we only used about 3 rooms....

Marlon was happy to tell me later in the morning, 'I have a new drawing for you'. I looked in his book and didn't see a new one.  The clown and a scribble.  He screeched, ' I drew that today!', over and over and over again.  He thought for sure he drew the clown this morning.  I showed him the date on last night's picture but still, he couldn't believe he didn't draw it this morning.  Funny how we get something in our mind and lose a sense of time.   Before bed last night, I saw an email that got my mind rolling.  Moira was asking my thoughts of my time in Vienna (33 years ago).  I was surprised how many I had.  Unfortunately, this meant I didn't sleep too well.  Today while Marlon was on the computer I wrote out those thoughts.  Nothing terribly interesting but I did post my writing of that time on my blog. In the afternoon Marlon and I walked to the mailbox and I tried to get him to walk more with me but he insisted on going ...

At least Marlon went outside a couple of times today.  I went to Guelph in the morning and was back by 1pm to help him log on to an online class he was registered for.  After the class, he was in a pretty good space but had a run-in with friends on minecraft where he felt bullied.  He got off, cried, and then went back on and played some more.  I sometimes wonder if he brags a bit too much which can aggravate others and they want to put him in his place.  Who knows about the dynamics. He was feeling better this evening than he has been the last few.  It is better if he doesn't get himself too worked up. I laughed when I saw this picture.

When I saw the weather this morning, I was glad we didn't have to be driving in it, but could just enjoy it.  Quite beautiful. A good day to be at home.  I am ashamed to say Marlon didn't go outside at all.  I didn't push it at first as I was clearing out some old papers and he was zoned out in his book.  After lunch and school work, I was getting him to come outside and he noticed friends were online and playing Minecraft… I looked at Marlon today and thought he looked different.  Not sure what it is.  He hasn't gotten any taller, maybe his face has filled out, maybe it is changing, maybe he is tired, or maybe I am just tired and seeing things.  I am not the best at recognizing faces so could be anything.

Before we left the hospital on Saturday, we were told to come back this Tuesday. I asked why, saying that last time we didn't have to come in the week between.  I was told it was because the doctor was in clinic.  This evening, when I remembered with a start that we were supposed to go in the morning, I emailed Marlon's nurse and told her we had been told to come in the morning.  She emailed me back to say it wasn't necessary.  A relief.  I know Marlon's blood counts are fine, and there is no reason for him to be seen by the doctor.  Glad to have the week away. The day we were leaving the hospital, Marlon had asked for a donut but didn't get one, partially because he didn't feel up for it.  Today he asked for one, so being the dutiful mom I am, I went and picked up a donut.  This past week, I have been to everyone's favourite coffee/donut shop more than I have in the past 10 years.  Not a place I normally frequent.  As it turned out, he ...

Being in the hospital is hard in part, because we are surrounded by so much suffering.  Parents are there with their kids, doing their best, but so often the kids are in pain, uncomfortable, or very, very sick.  The screams of the little ones.  Sometimes it is just fear.  The nurses and doctors can signify discomfort.  Some know to appreciate the doctors and nurses. I spoke with the mom of a three-year-old boy.  I don't remember what kind of cancer but it is all throughout his body.  They are new to the journey.  Two and a half weeks in, though she spent a month trying to get answers on what was wrong with her son.  And I wonder how it will be.  Will he be able to recover?   I remember the early days, the questions, the concerns, and the feeling of being in over my head. Now, I feel more comfortable.  I see how much better Marlon is and how it looks very promising that he will recover and live a healthy, normal life. ...

After 10 pm last night, a new person came into the split part of the room where Solomon had been.  A teenager, so not noisy once all the introductory talking was done. All in all, a fairly peaceful night for Marlon.  The nurses were surprised he didn't get up to pee more. He woke up with the mouth sores that are common with this chemo.  Seems like every time he wakes up with this feeling, is gagging and throwing up, and then starts to feel better.  So yes, he threw up before ingesting anything.  The doctor was surprised the sores eased up so fast.  There is always the possibility for more.  No appetite again. Over the course of this treatment, Marlon's tastes for foods has changed so many times I can't keep track.  Way back, before he got the feeding tube, about all he could eat were garlic stuffed olives (I was having a hard time finding them in stores after I cleaned out Sobeys) and popcorn.  Then he wouldn't touch either.  I was glad ...

Not the best night but not expected to be either.  Solomon, the little boy in our split room, was up in the night. Marlon woke up to use the washroom just before Solomon fell asleep.  He was feeling horrible, had diarrhea.  He wanted me in bed with him and he did throw up a while after using the washroom.  He slept after that but did have more diarrhea in the night.  Grateful he is good at getting to required receptacles before letting go.  We did sleep between 4 and 8. Not surprising that Marlon didn't have much appetite but at least he only threw up the once. We did some drawing together and walked a bit and he spent a fair amount of time on the computer.  Solomon's dad was working in the room and the little boy was wandering around.  So cute, the few words he says.  He must be 2 because I heard him say NO a few times.  He went home today.  This is our last night and assuming all goes well (which it is, so far) Marlon will be set ...

We are in the split room and the boy next door is young and scared of the nurses.  Early this morning, around 500, his machine started beeping.  Eventually, I got up and called a nurse to stop it.  But the boy had woken up and started screaming 'Da-eee!'. Again and again and again.  His dad is with him and when he is crying there is no middle D.  Marlon woke up.  He fell back asleep.  I did too, but it seemed I had hardly fallen asleep when Marlon needed to go to the washroom.  Oh well. This morning Marlon was NPO for the lumbar puncture.  He is quite used to being put under and I am finally getting more used to it as well.  The anesthesiologist starts pumping the white liquid in and the body doesn't stand a chance.  The eyes flutter and it sleeps.  Just as his eyes fluttered Marlon said Bye.  A chuckle went around the room. I was noticing today how many people are in the room for this.  Around 8, including a student ...

What English word has three consecutive double letters? Bookkeeper Marlon's pick: Imagine you are in a dark room.  How do you get out? Stop imagining We didn't do riddles today.  Didn't do a whole lot except hang out in the hospital room.  I made Marlon go on a few walks before he lost some mobility.  Accessed again.  Oh, how he dislikes being accessed.  I don't think there is anyone that likes it though.  Attached to a pole that stays close at all times. At least he wasn't accessed until after 8 pm.  He didn't really need to be at the hospital until then except for the morning appointment, but it just isn't worth back and forth twice in one day. We did drawing wars today.  I am not good at drawing.  It was good for a laugh. The first was dinosaurs which he chose because they aren't his specialty.  Marlon's is on the left, mine on the right. We agreed my bottom one looked like a cross between a gerbil and a rat with his mouth stitch...

What is put on a table and cut, but never eaten? A deck of cards Another dentist appointment for Linsy today.  Hopefully the last one for a while.  The treatment itself wasn't that bad but she was not in a great space for it.   I have felt the shutdown, while hard on so many, is very hard for teenagers. Linsy had hoped to get her G2 in September, but with shutdown, she changed it to January.  She booked a time to go drive her test on January 6th.  Grey zone.  She acted quick but still, most drive centers were all booked up.  She managed to get a time for the end of January in Hamilton and took it.  Grey zone extended so she misses it again.  Rough. The other day we were given a glass mug for Marlon.  Strong and sturdy.  Thank you Quin.  Today, however, Marlon was given 3 Garfield mugs!!  Thank you Jennifer.  One the exact same as the one I broke, plus two more.  This morning before I went out to pick up the ...

When you look for something, why is it always in the last place you look? Because when you find it, you stop looking. It was 230 in the afternoon, and Marlon was wondering how the day passed by so fast.  Just happens sometimes. We can tell a new semester has started.  Paco plays his classes through his computer speakers, and we hear the teachers' voices.  New voices. Linsy always uses earbuds so we never hear her classes. Paco still made time to play Minecraft with Marlon.  It is harder for him in the evening after supper.  He gets overheated and over-excited and by the time he gets off the computer, he feels sick and nauseous. He calmed down, we did some riddles together, and off to bed.  When he was getting into bed, I was remembering just a few months ago when getting into bed and moving into lying position was a hard task.  He has come a long way. A scratch art doodle pad picture What is put on a table and cut, but never eaten?

Yesterday's riddle How do you make the number one disappear by adding to it? Add the letter 'G' and it's 'Gone' Marlon has been listening to the first book of the next series of his Dark Materials by Philip Pullman, La Belle Sauvage.  I do try and get him off ever so often otherwise it just seems he is sitting there not really participating in the world around him.  That and the computer.  Oh well.  He is expanding his mind, I suppose.  Fractions have moved to decimals in math and he is finding that frustrating too.  Just when you get the hang of it, it gets harder. Paco and I were bringing wood to the steps (I haul it, Paco stacks).  Thomas tried to get Marlon to help but he just went off and did his own thing.  He was outside and getting some exercise so that is good. Paco's next semester starts tomorrow so he won't have the time to play Minecraft with Marlon so much.  Adjustments. Riddle When you look for something, why is it always in the...

I have not been on my bicycle since the end of August.  A long time.  It is my main mode of transportation to work.  I haven't worked in so long.  Soon I think.  I am so grateful that we have had a smooth recovery road to health compared to so many horror stories of complications or recurrences. Today Marlon spent a decent amount of time outside.  He was playful and energetic.  I see a pattern with the rounds of chemo he is going through now.  Just over a week after the last dose, he is feeling so much better all round.  A few more days and back at it again. I went to the market this morning and as much as Marlon would have liked to come along, now is not the time to be shopping together.  He has gotten used to being home and doing his own thing. He got a decent amount of time playing Minecraft with his brother this evening. He prefers not to have his face shown around too much A riddle How do you make the number one disappear by adding ...

Marlon was getting frustrated with fractions today.  Either have to do more baking with him or get lego pieces out to help the understanding along. He came into the woods and climbed on the tree that missed me.  He was nervous doing it, thinking it might crumble underneath him. This evening he was getting too worked up playing Minecraft with Paco and started to feel sick.  He can get pretty excited.  He got a riddle book for Christmas and before bed, we sat around testing our brains.

This morning Linsy and I went to Georgetown and she endured a root canal.  She did quite well. When she was younger they couldn't do dental work on her because she was too nervous, and if awake, couldn't sit still.  Over the past month, she has had so much work done.  Soon we will get Marlon's dental work done but waiting for the doctor's ok. In the afternoon, I managed to convince Marlon to come outside.  When outside it seems we are often cutting wood, splitting it, or hauling it.  I had Marlon pull the sled with 3 pieces of wood while I pushed.  He went back inside and I continued.  I was in the woods, loading up the sled, and stopped, listening to the soft, gentle sound of the melting snow and ice.  Then behind me, I heard a louder noise.  An animal?  What the heck….?  Before I really knew what was happening a big, dead tree crashed to the ground.  Wow!  My heart was pounding and I was shocked. It missed the piles of w...

Grumpy day.  For me at least.  One of those days I would just like to walk away from it all. Not that there was anything particularly bad about the day.  Just a day.  I busied myself sorting out the freezer while Marlon listened to book and did whatever.  At one point I asked him for the title of a book he is interested in reading.  He told me to go find it.  Argh.  I just walked away and he did go get the title of the book but that brought him to the computer where he is easily distracted. He did do school work and came to report he is working on fractions.  Though he said it as a complaint with a frown, he seemed kind of pleased. He ate well and was feeling fine today.  Hopefully, it continues like this.

It is not as easy for Marlon to get on the computer here at home. The internet service isn't that strong so he has to be patient.  Not always easy.  He was about to go on this morning but his dad said he had to wait.  He was upset and cried because he is being told what to do and when to do it.  Not enough choice.  He survived though and did other things.  I sorted through our Christmas box and had him help me with that.  He helped his dad fill vitamin capsules and next thing he knew he was able to have time.  He played minecraft and then met some friends for a zoom meeting.  He enjoyed that one as well. He ended up getting too much computer time. This evening he was saying the days seem like whole days now whereas before he was sick they seemed like half days.  I think it means the time doesn't pass as quickly.  I did point out that he hardly goes outside at all now and that does make a big difference.  The more I try to convi...

Marlon resists exercises and moving too much and complains that his shoulders hurt.  I'm sorry to say but he isn't getting a lot of compassion from me.  He can move, he can do stretches.  I can support him, but I can't do it for him.  Power struggles and I try to step back (not good at it but aware of it). Otherwise, Marlon felt better today.  Not the sick, queasy feeling that was around yesterday.  He ate decent meals and kept his food down.  Grateful for that. Paco played minecraft with Marlon this evening and the five of us played cards (Uno).  Paco's next semester starts in a week and I know he won't have time for such things when it does.   Marlon did a drawing this morning but spilled some of his soup on it so this is from a couple of days ago.

A full day at home.  Now to wean Marlon of the expectation to be on the computer most of the day.  Easier for him now that he does have audiobooks ready to listen to.  Grateful for the library and the many audiobooks to borrow.  Since having kids, I have a strong appreciation for the library.  We have made good use of it, with both written and listening books. We are so lucky in our journey with Marlon.  In the hospital, I see so much, and so many cases that are so much worse than ours, with so much more suffering.  So far Marlon's recovery is textbook smooth.  For many, it is not that way.  And when I hear babies crying and crying, I know they cannot begin to understand what is happening to them. Marlon is still recovering from the chemo the other day.  His tendency is to want to do very little but I do my best to get him moving and remind him of the negative consequences of avoiding movement. Before Christmas, we bought a turkey, tonig...