Lovingheart

Today's big project was chocolate making.  Along with the book from Damon, came cocoa butter and a recipe.  Marlon was very excited to make it, and we did one batch mid-morning.  When we looked the other day we found coconut milk powder so we used that instead of regular milk powder.  The chocolate was pretty tasty.  Marlon made a little video. https://youtu.be/46ALW7ZvPvg Early afternoon, Marlon and I walked to the mailbox (in the rain), where we did a trade with Heather.  Milk powder for coconut milk powder. So we made another batch of chocolate with the other powder.  Not quite sure what we did wrong (too hot?) but it separated a bit. Still tasty stuff!   Marion had minecraft time with friends.l.  At one point in the evening when I was getting supper, Thomas came to the kitchen and looked at me to see if I was wearing headphones.  I often do, but I was not. Thomas was wondering if he might be the only one without.  Paco, Linsy, and Marlon, at the table, all plugged into headphon

  A beautiful November day today.  Yesterday when driving past a hiking trail in Guelph, the road nearby was full of overflow from the parking lot.  Cars on both sides of the street.  People out enjoying the day.  Though I didn't go down that road today, I imagine it was the same. I drove Linsy to work this morning.  She had hoped to have her license by this time but another casualty of the times.  She completed in-class driver's education in March, right before shut down.  In-car is only just happening now. One thing I was doing today was sorting some pictures and uploaded a couple of videos.  Here is one of Linsy's skating. https://youtu.be/nBFFcKjUcqI Marlon had a pretty good day.  I don't really know what happened to the morning.  I think part of it is that he has started listening to an audiobook.  He zones out a lot more. Paco and I drove to a neighbour's down the road, to collect some more gravel.  Our laneway gets pretty muddy when it is wet.  Filled up sev

Appreciating normalcy Going about our day with little thought or notice of what has been, what is, and what is yet to come. Marlon and I went to the market this morning.  An uneventful trek but nice to do.  Even though the market is so different from what it was, the people are still the same. Shortly after getting home, I took Linsy to work, and stopped at the library to pick up a book waiting there for Marlon. Later in the day (4-7) Marlon did a workshop.  A seasonal one, learning the programming and use of laser printers.   He made this ornament While he was there I picked Linsy up from work.  I didn't do much otherwise, just a lot of driving back and forth. With things being so calm and 'normal', I think more about going back to work.  I don't know what is coming as far as Marlon's treatment is concerned, so I can't make that step yet.  I know he won't be happy when I do, and it will be a gradual thing.  We continue on, and appreciate each day.

A home day and a good one.  Linsy had a PD day today, so Marlon jumped on the computer after breakfast.  Marlon uses Linsy's school computer for minecraft. I got him to come outside with me midday.  He doesn't want to help out.  Nothing new.  He has not been a willing helper for chores of any sort.  I split kindling and then wood.  Marlon hung out, playing with his whip.  Then he came inside and finished the craft he started on last night.  Lanterns. We took these pictures this evening in the dark. I was outside longer than him and then I remembered we were to walk to our neighbours, so I got Marlon and we walked to the road.  Picked up the soup she had made and was sharing with us.  The dog across the street was trying to follow another dog walking down the road with his owner.  Marlon and I got the dog to follow us back onto his property and away from the road.   After lunch, we walked to the road again.  Marlon's friend, Damon, and his mom dropped by with a package and

I am reminded, it is a good thing Marlon is feeling bored again.  Remembering all those times, the days passed, and he didn't do much or move much.  Maybe listening, but couldn't concentrate to read. This morning he drew some, read some and was bored.  Wanted computer time.  Antsy.  He does have things that need tidying so we did some of that together and he did get computer time. We went out after lunch.  He hung out with a friend while I ran some errands.  They did various things, including playing ping pong.  He can do that, the movement, the mobility… In the evening Marlon started working on his next kiwico kit.  A science-based craft he gets every month. A few times he got frustrated to tears.  I suggested he wait until morning to finish. Marlon came with me to pick Linsy up from skating, and we took a slow drive home to admire Christmas lights. And again, when he is climbing under the covers at bedtime I remember two months ago, and what an effort it was to move to get in

T oday was a home day for Marlon.  Quiet and peaceful.  Reading and computer time.  Midday Linsy and I went out for our own pokes.  Blood tests from our doctor's appointment.  We are all well. Linsy worked the evening and skating later so the day was more about driving here and there. Paco was up late last night preparing for a presentation.  It was 430 by the time he finally went to bed this morning and up again at 8 this morning.  I heard it, but luckily, Marlon's sleeping is good and not easily disturbed. We did go out for a while in the afternoon.  Played catch with snowballs. Paco took time out this evening to play a game of euchre.  Thomas and I won against he and Marlon. When Marlon got into bed, just as I was leaving to take Linsy skating, he was feeling very bad and nauseous.  He didn't throw up but still not feeling great.  Would be nice to see him have a day completely free of nausea, and with a strong appetite.  Moira was asking about his mobility.  It is much b

Up early and to the hospital. The door to the finger poke lab was closed, and I tried to open it, but it seemed to be locked.  We waited around a while and someone came along and just opened it.  Apparently, I didn't try hard enough. Once upstairs, the nurses were saying he was to have the procedure regardless of his blood counts, so they accessed him.  We were shown that Marlon's platelets are so much better.  Actually in the normal zone at 230 (last week Tuesday was 43 and Thursday was 80).  His neutrophils however went down from .2 to .1.  We waited around for a while and then the doctor came in and said that he would not be having the procedure (bone marrow pull) after all.  They can wait beyond day 42.  Maybe Thursday, maybe next Tuesday. Sent home again without having anything done except being accessed and then de-accessed. Some others were going on a hike this afternoon so we decided to join them.  Marlon was ambivalent about going.  It was fun though.  Ten kids from 8-

  A much better day today all round.  Marlon had Keagan come for a visit and was able to give him his birthday present.  They play together online and now have matching headphones.  Our families are both careful who we hang out with, and Keagan is one of the few.  They have always been good friends.  Not a long visit but just perfect and by the time they were leaving Marlon needed a rest.  Marlon did get to hang out with K online later in the day via minecraft, both wearing their new headphones. In the afternoon Marlon and I went outside.  He had made a couple of small snowmen earlier while waiting for Keagan to arrive.  We walked to the mailbox, threw snowballs, played in snow drifts, and traipsed around.  Marlon had a lot of fun doing that.  He enjoys cooler weather and the snow. Today he enjoyed lunch, got the supper he wanted, and felt so much better.  No feeling sick later in the evening (I got the pill into him a bit earlier).  A quiet evening here tonight, with the older two doi

  What a lot of snow!! No news to anyone this part of the country.  And I am horrified to think Marlon didn't go outside at all today.  I didn't go out until later in the day to clear snow.  Lots of photos out there of great snowpeople but we will not be adding one.  A few times today, Marlon said it was not a good day.  Nothing in particular but just one of those days.  He wanted one thing for supper, and I made another.  He just felt off.  Just finishing supper, and he started to feel nauseous.  I keep hoping to be able to hold off the vomit, and yet I know, when we get to that point, it is too late.  Sure enough, it looked like none of the day's food was digested or stayed down.  An off day!  While he is only taking two pills a day, I realize the timing is important.  One pill he used to take in the morning but we moved it to the evening to help with the morning sickness but I think it should be early evening.  Still learning. Before bed, we played euchre again.  This ti

  This morning both Marlon and I went to the market.  His first time there since March.  Uneventful.  Some people happy to see him.  He wanted to see a friend, but that didn't work out. When we got home, he listened to podcasts, but doing that on the computer, leads to more minecraft time.  In the end it seems there was a lot of reading and computer time today.  On the plus side, he is reading books rather than listening as he is temporarily out of audiobooks. I saw there was to be a drive-by Santa Claus 'parade'.  In the high school parking lot, was mostly the firefighters with different displays and also the citizens of the year.  I was so touched by the effort put into it, and that there was a substitute for the usual parade. In the afternoon we were outside to bring wood to the steps.  I got a show and tell of some of his sticks as I was loading the wheelbarrow.  This one is curvy, this one has branches that point towards each other.  One he commented that he saved it,

Another quiet day.  Occasional nausea but overall pretty good.  A present we bought for Marlon's friend's birthday arrived so he had fun wrapping it.  We went outside a few times.  Marlon was playing with sticks.  I was happy to see that.  It has been a while and he likes his sticks.  I remember a few years ago Marlon came in the house crying big tears, very upset.  He broke one of his sticks.  Ever since he could walk, he has had a stash.  Appreciating different uses and shapes.  This particular stick was well-weighted and balanced.  He ended up getting a replacement but still missed 'that' stick.  Today he was going to show me a trick he was doing with two sticks, but one of them broke, so it didn't work. He wasn't very upset. In the afternoon we went for a walk together.  Otherwise he had computer time, read, and just hung out.  He and I played a game together and wanted to play cards but couldn't get others involved.

  We got on the road nice and early this morning.  The sunrise was an amazing colour! Went for finger poke, and before they accessed him, they waited for the blood results.  Whadya know!?!  They weren't high enough.  The other day his platelets weren't high enough at 43 when the minimum is 50.  Marlon had the blood transfusion instead of the procedure.  His neutrophil counts were high enough on Tuesday at .7. Today his platelet level was high enough at 80 but his neutrophils were .2 which is too low.  So basically, they said have a good weekend, come back Tuesday, and the procedure will be done then.  It has to be done by day 42 of the second stage of induction and Tuesday is day 42.   We got home shortly after 10 this morning.  Hard to make plans. So many changes.  So much uncertainty! Other than being tired Marlon was in a pretty good space today.  Same kind of day with reading, computer time, and other things.  I ran some errands and he went for a walk.   Once in bed at the

  November 18, 2020 No morning sickness today.  Marlon woke up feeling ok, and was ready for breakfast.  Overall, an uneventful day.  Some reading, some computer time, schoolwork, talking, and crafting… He finished making his rocket launcher.  At one point he got frustrated, started whining at me, and I whined right back.  Afterward, I felt embarrassed at my childish reaction.  Short fuse.  Both Thomas and I took turns helping, and he got it done.  Works pretty good.  This is a link to the rocket in action http://www.youtube.com/shorts/dw47UewwoPY In the afternoon I took a drive to the dump, and Marlon joined friends on minecraft.  This evening he got his early Christmas present (wrapped in proper Xmas paper). Proper headphones with a microphone.  Whenever he joined others online, he was taking Paco's or Linsy's earbuds.  He didn't like the buds, and they didn't like the extra ear wax! Marlon didn't eat a huge amount today but he did eat his meals and eating felt ok

 L ast week, the doctor told me this Tuesday would likely be check-up, possible transfusion, and next Tuesday, the procedure.  Then I was called, and told to prepare for procedure today. Well, today, Marlon had a transfusion.  His levels were a bit low.  They have been worse, but there is a minimum level for platelets for the procedure, and his was just below that. So I woke Marlon up to get him on the road at 630.  No food or drink before sedation.  In the car, Marlon felt nauseous, so not consuming anything was just fine.  He did throw up once in the car.  He also threw up 3 more times at the hospital.  After the second time, I gave him a ginger chew.  He did throw it up but said at least it covered up the horrible taste of stomach acid.  Poor guy, he really felt horrible this morning but after the final vomit, he was fine.  We just sat around, he was mostly on the phone, either watching or playing.     The question at the end was whether he get de-accessed or keep the port in until

I was just thinking how life throws us all curveballs.  Things that on the outside can look bad, but everything has a gift.  Everything has purpose.  And even when things may appear bad, there is good.  In the depths, if we look, we can find light. If I look at what we are going through now, I don't consider anything other than full physical recovery for Marlon.  If anything I can see the emotional may take more attention.  Is this naive?  Pollyanna?  Or just a way forward?  I suppose it doesn't matter.  We all have our challenges.  We all deal with them.  We all have good days and bad days. I feel ok now because we are having good days.  A parent's days are strongly affected by their child's.  If Marlon were in the midst of a bad spell I would feel more down, I am sure. When asked today by Josephine, how he rates how he is feeling out of 10, he said 8 or 9!!!  That is an amazing gift.  Wow! Tomorrow we are back at the hospital.  As long as his blood levels are ok, or o

  For about a month I have been giving Marlon 6MP, a chemo, at home every night.  I was thinking that is why he woke up feeling nauseous in the mornings.  He hasn't had that chemo for a few days but is still waking up feeling sick.  Marlon had been up and in his chair for about ½ an hour this morning before he threw up.  Then a while after that he was able to eat breakfast and enter into the day.  Still congested from his cold.  It is holding on but he has no fever so I trust this body will eventually shake it.  I assume his lowered immune system takes longer to overcome these things. He finished the book he has been listening to.  Book 2 of the Dark Materials series, by Philip Pullman, The Subtle Knife.  Slightly awkward time when the book is over.  What to do next?!  He drew a bit, and was about to start on a rocket launcher project when he got into playing Minecraft with friends online.  This went on for a couple of hours.  A long time but on a rainy, stormy day like today it se

This evening Marlon was telling me that he had several dreams last night.  He often has vivid, dramatic dreams, but not nightmares too often.  Last night he had one where it was raining, and the laneway was covered in snakes, some as big as tree trunks.  A picture that he said he could still see and looked so real.  What surprised me, is that he didn't mention it until bedtime.  At least it didn't affect his sleep. I went to the farmer's market today, the first time since March.  We used to go every Saturday.  Marlon had thought about coming for the drive but didn't really want to go into the market.  Thomas convinced him to stay home.  He is still sniffling, and sometimes has a cough that sounds like it is settling in his chest.  He is slow to recover. For a while, he has been wanting a burrito from ZTeca, and I got him one today, but unfortunately, it didn't really work for him. He still asked to see a friend but the only way is chatting online at this time, at le

 T hings change so fast.  Today was a good day.  Marlon was full of energy.  His eating was not great but did get better as the day went on.  Marlon completed his toolbox.  He and Thomas were fixing up some final details in the basement and Marlon went up and down the stairs several times. We walked to the mailbox together.  Going towards the road has been Marlon's favourite for a while.  He had his routine, his rock, his runs.  I go with him now but if he keeps up like this I can see him going back to picking up the mail on his own. The little table here is littered with origami.  Little mini origami figures.  Seeing how small he can make them, how much he can do with one piece of paper. He asks about seeing friends but until everyone in our house has completely gotten over the cold I tell him we will keep to ourselves.  He still sniffles a bit and coughs occasionally and I don't want to see the cold getting into his lungs.  Keep getting better!!

  A peaceful night and a calm day.  Phew.  What a relief! Marlon felt ok this morning.  He even ate some breakfast.   Early afternoon, Linsy and I went to Guelph.  Marlon has supplies to make a wooden toolbox so we left him set up with that. After a pleasant time in Guelph running errands with Linsy we arrived home to find Marlon in a good mood.   He had created more foil figures, attempting hands and fingers. Origami: four frogs, three fish, and one crane with one piece of paper.  He even tried to make a mini ninja star with the last piece but it was a bit too small. He sanded the wood for toolbox, to prepare it for assembly.  In the evening, he started screwing the pieces together. Other than the sanding and some assembly, he didn't do much physical activity today but his energy was definitely not what it has been. He did also struggle with eating and did not get in as much food or drink he should have. As he was getting into bed tonight and moving around to get under the covers

Remembering… 11/11 Not the day I had anticipated.  Marion woke me up around 3 saying he was going to be sick and he was.  He didn't want to be alone so I climbed into bed with him and he continued to vomit every half hour to hour.  Needless to say, we didn't get much sleep.  And I wondered where this liquid to vomit came from.  He only had little sips.  Stomach acid and who knows what.  Nothing solid.  We tried all sorts of things once daylight came and he kept nothing down.  I finally got in touch with nurse Judy around noon   She suggested I try anti-nausea pill again, which I did, and within 20 minutes it was out. So we were told to go to emergency for hydration.  Poor Marlon.  So much throwing up and each time he breaks out in a sweat and then gets the chills from being damp.  And of course, the cold is still there with a bit of a cough and sniffles.  He was crying for so many reasons.  He felt horrible.  So bad.  The retching again and again.  He didn't want to go to h

 L ast night as Linsy and I left skating, I went to the car to open the door.  It doesn't have a clicker, so we use the key.  We have been having a hard time turning the key ever so often. I was having a hard time.  I wasn't able to unlock the car.  I was trying to get the key in the passenger door, when the doors clicked open.  Linsy and I looked at each other in surprise before we realized I was trying to unlock the wrong car!  Another girl that skates at the same time and her mom were walking to the car.  We all had a good laugh that I was trying to steal their car.  I mention it now because it has continued to make me laugh throughout the day when I remember my stupidity. Nice to laugh! This morning, Marlon woke up earlier than usual.  The congestion in his head stopped him from breathing through his nose, and he was uncomfortable.  Other than that, his mood was not unpleasant.  Finger poke took a while today, as there were several people ahead of us.  We got to clinic and

Unfortunately, Marlon did not have a great night.  I spent some time with him and he moaned, saying it was the longest night, his nose wouldn't stop running.  Eventually, he did sleep but didn't sleep in as I had hoped he might.  The days run into each other, I don't remember if he threw up this morning.  It has become such an everyday event.  If he didn't, he sure felt like he was going to.  He uses the computer as distraction.  Playing Minecraft. I helped Thomas outside for a bit and then we were going for a walk in the woods so I got Marlon to join us.  Something he has always liked.  He is leading the way back and all of a sudden he squawks and jumps back.  A garter snake slithered past him and he was scared.  Took a while for Marlon to stop crying, and be able to go back, even then he was very upset. In the afternoon he had more minecraft time, some with friends.  Otherwise today he spent more time reading books rather than listening.  I am glad for that. I am gett

The other day as I heard Paco sniffling and moaning I thought, 'He has matured, he has a man-cold'.   This morning Marlon woke up with a sore throat and in no time was sneezing and sniffling.  He has the cold.  Hmm, hopefully, it is ok for him to catch a cold.   He was feeling pretty bad and before eating much of anything he was throwing up.  He did manage to eat some breakfast after that.  I was using the washroom upstairs and heard scratching at the door.  Marlon walked up.  Glad to hear it. He asked for the lunch that has been working for him lately, a soup we call B'noodle.  Baked beans and noodles and veggies.  Did not work for him today.  Darn! We decided not a good idea to have a friend over, as it is harder for them to keep their distance.  Aunt Olivia decided she would come by and deliver a big shipment of books for Marlon that a friend had given her.  Along with her dog, we went for a walk, doing our best to keep our distance.  If anything I think we took a longer

J ust remembering part of the meeting with the psychiatrist yesterday.  Marlon said his favorite subject is science.  Colin, the psychiatrist, asked what part of science he likes the most.  Marlon at first wasn't sure and then said aerodynamics.  Colin reacted with a laugh that Marlon was using such a fancy word and then he said he likes making paper airplanes.  A big word for a common craft. As per the norm of late, Marlon starts the day slowly and feeling terrible.  After a while he perked up,  did eat breakfast, and snacked, had lunch, and a small dinner.  He went outside a few times, and seemed to have all sorts of energy!  When he has energy it is hard to understand what he is saying because he speaks so fast and he moves.  Hands moving, arms moving, and his little dances.  Movement, energetic and simple. Linsy wasn't around this evening but the four of us that were here played euchre together and Marlon was shivering or vibrating with energy.  Afterward Paco told him to g