Lovingheart

Marlon had a bit of Minecraft time with friends to start the day and end it.  He did come to the market and then I brought him to see the puppies.  Another mom and I were agreeing it is a huge gift to be able to hold the little puppies and watch their development.  They are just able to walk but wobble and fall down.  Starting to play together and practice barks.  One even ran a few steps.  So much change in just two weeks. Marlon wanted soup today and was remembering one his dad made last year when he was in the hospital.  I tried but failed to make a good soup.  He said it was bland and not a good mix of spices. Oh well. He's been making cranes lately rather than new designs.  He will never make 10,000 but there are several hanging around. He put question marks all around this because he didn't know what it was.

I thought that this round of steroids doesn't seem to be affecting Marlon too badly and then I berated myself for it.  We still have a few more days to go and the side effects can happen.  What kind?  Well, food cravings, often a strong desire for food, they are there but mild.  Crazy moods.  One mom was saying her son and his dad keep getting into fights when the boy is on steroids.  His mood goes crazy and his dad falls into the trap.  The other side effect that affects Marlon is sleeplessness.  Even though he is tired, he is unable to sleep.  We'll see how that plays out. I said to him tonight, he can start getting his life back, building up his strength, doing more.  At this time though, all he wants are audiobooks, videos, and Minecraft.  Hopefully, he can at least spend time with friends. My siblings and I from a few years ago at my sister's cottage.  It was amusing with our brother sleeping and oblivious.

Marlon was unimpressed that I was not around much today.  In the morning, Linsy and I helped a friend move, and it was a late lunch by the time we got back.  I picked up subway and made the mistake of getting mayo on his pizza sub.  He did not like it.  I messed up.  He was upset. In the afternoon, Linsy had an appointment and afterward, we dropped some things off at Kim's new place. Marlon felt quite sick for a while in the evening but it passed. When he had long hair, he liked his 'tail' and the attention the long hair got him.  It was sad to let it go.  With his sickness, he gets a different sort of attention and he feels more uncomfortable with it.  He doesn't know how to react.  Fair enough.  As his good health is more consistent, how he is perceived will change again.  That will be another adjustment. None of these pictures are very recent but some nice braids.

I finished listening to the book, The Song of Achilles.  Not my normal kind of book but it was well written and puts a more personal spin on an Ancient Greek hero.  Because I asked him a question about Paris,  Marlon and I were discussing Helen of Troy.  He thought the book I was reading was incorrect but turned out he misread something.  So we both learned. Linsy, Marlon, and I visited the puppies this afternoon.  Marlon doesn't have the patience for hanging out there too long but he brought a book and folded some of his usual origami: boxes, cranes, penguins No, the cat was not visiting the puppies but Linsy and I were laughing at his position and seeming comfort.  After the picture, Linsy stood up and Mojo decided it was no longer the best position as he had to steal her chair. After puppies, we went to Macmillans and Sobeys.  Among other things, I got fixings to make our own poutine.  Well sort of, still not from scratch, but it was good....

His blood counts were high enough that Marlon has officially entered maintenance.  This is exciting but for now, it is overwhelming.  We met with the doctor and got a list of medications he is supposed to take.  Some twice a day, some different number of pills each day, one, once a week.  Some with food, some before.  Yikes! The benefit of this time is there is no more aggressive chemo, and the body will start to rebuild. Before he is about to be accessed, I put a drop of peppermint oil in a mask that he wears.  The smell is strong and distracting so he doesn't pay as much attention to the access part of it, and he sure doesn't notice the bad smell of the cleaner they use. When he is being put under for the LP, they push the sedative into the port.  Marlon has gotten used to the sensation and can tell when he is being taken over by sleep.  Today, just before he went under, he said, 'So long suckas'.  A chuckle goes around the room and the doc...

Continued story from August 2020: His symptoms seemed to be easing up a little and one night Marlon is telling me not to worry, it is all getting better, he is healing, he can even walk without limping.  Not even 3 hours later he is screaming from bed, his right elbow is hurting.  Bad elbow pain sometimes down to the wrist or up the arm.  Bad days and a couple of practically sleepless nights and then the pain was in the right leg.  More sleepless nights crying on and off all day long until we are almost 4 weeks into the pain.  I come home from work at night to see he hasn't even eaten breakfast.  During the last 4 weeks, he was not eating much due to the pain and misery. Then, there is a tooth that is hurting as well.  The dentist can't see him because he has an elevated temperature and is sick. Crying out in pain during the day as his right leg (mostly thigh and some knee) hurts so much.  Right arm is useless from pain and eating next to nothing ...

This is the next part of last summer.  At first, I thought it was growing pains.  Marlon has never had a high tolerance to pain. Why did we never go to emergency?  If I were on my own I would have but I had others to keep in mind.  Also with all the stories of separation and covid, I imagined not even being allowed in the hospital with him and knew that would not work.  It was not possible to just make an appointment with a doctor or go to drop-in clinic... On July 30th, in the evening just before bed, he complained his left arm, around the elbow, hurt. That night, because of the pain, he did not sleep well nor did he for days after.  Crying from the pain, being woken from it if he dozed off.  The pain moved around, starting in the elbow into the upper arm and shoulder, sometimes also in the elbow and upper arm on the right side. Eventually, the pain settled in his shoulder around the tendon and was slowly healing.  He still could not use his arm,...

I will share the story leading up to the diagnosis.  I haven't, in part, because I feel bad it took so long to actually get help. Written Aug 26 On June 29th in the morning, Marlon said he wasn't feeling well.  Sick and dizzy.  While walking he wobbled and before I could get to him he fell down crashing over a box on the floor with paint cans.  I got to him held him and his eyes were open but it didn't look like he was there.  He did tell me after he heard me calling for Thomas and wanted me to be quiet.  The fall banged his neck and chest.  A little while later he vomited and then the fever started.  It lasted 6 days and was a fairly high temperature.  He was at times delirious and hallucinating. One evening closer to the end of the fever he became quite scared and panicked (partially from his crazy thoughts). He was crying hysterically and saying he couldn't breathe.  During the fever he hardly said anything, very unusual for him to no...

One of those days where I feel like I didn't accomplish that much but then I look back and can see I did get some things done. A load of laundry, clipping some weeds, a walk to the library, preparing meals...  I could have done so much more but some days the wheels are spinning and I am going nowhere. Marlon and I did play some catch together.  That is a new one for us.  He enjoys teasing me for my lack of catching skills.  I have never been terribly coordinated with sports that require catching or throwing.  Marlon has fast reflexes.  I am hoping to see him getting physically better soon.  The right leg is not much better.  He is still lop-sided. Even on those ho-hum, dreary, heavy days, there is always beauty to be found.

Marlon was complaining of a headache again today.  So glad he didn't have to have procedure this week.  Aside from the headache, he had a good day.  Probably on a device too much.  Paco has been too busy to play Minecraft with him lately but they did get time together tonight.  It was time for Marlon to get off and he got off easily because he was feeling quite nauseous.  Luckily he didn't throw up. At bedtime, we were talking about tickling someone to death and I said I didn't think it would be possible because once you passed out from not being able to breathe, you would start breathing again.  I told him of something that happened to him when he was younger.  Very little kids have the 'inhale before the wail'.  That deep breath in before the cry begins.  Marlon would take that deep breath in so deep that he would pass out.  When I told him about it, he thought it quite funny but I told him at the time, it was actually very scary....

Marlon got his Kiwico package today.  Lately, he hasn't had the patience nor the interest.  It was a haphazard job.  Today, he was more interested but also very frustrated.  It did not go together easily and was finicky.  Eventually, he did get it going and was happy with the result.  I was happy he didn't give up and I assumed if he stuck with it his satisfaction level would be higher. He is still enjoying green beans and had a couple servings of them.  Lucky he helped pick some. Paco is better today and has recovered well from giving blood.  Now we wait to hear what his blood type is.  I am guessing it is the same as Marlon's but i don't know any more than anyone else. We followed a chalk pastel drawing tutorial and this is Marlon's end result.

This morning, there was a little boy waiting for finger poke and then in the clinic, that was most upset about not being able to eat.  Crying, sometimes screeching.  I am sure all the other patients there understood his frustration. Marlon's blood counts were not high enough.  At this time, I was happy, because it gives us another week's break.  His platelets are at a good level, in the normal range, his hemoglobin is low but I think it would have been high enough to continue.  It's his neutrophils, his ability to fight infection, that are still low at 0.4.  As soon as Marlon was told he didn't have to have the procedure, he was eating some of the food we brought along. Since Paco got back from work early, and Marlon and I didn't take too long at the hospital, we finally got Paco to give blood.  I went with him so he wouldn't be driving afterward.  I stressed the importance of drinking lots of water. After giving blood, he got back in the car and ...

Many times throughout the day, when getting my attention Marlon asks 'Mama?'. I usually reply with a 'Marmar?'. I was happy to hear some paper folding happening again.  This is a winged box.  He said it was a challenging one. He was happy with his volcano with trees and a dinosaur in the left. We sat and listened to a podcast together rather than him locking in his headphones.  Between the two of us there are several interruptions but nice to do. After a short walk, he felt his headache but not as bad as it was the other day.  He did swim in the afternoon.  While he was in the pool, I heard Stella barking non-stop, probably because she likes to supervise those in the water.  After Marlon got out, I went to say hi to her.  Pat was just coming out to check on her and asked if I wanted to take Stella for a walk.  Yes, of course.  She is an intelligent dog and is nice to walk with as long as she isn't on a leash.  She is responsive and so cu...

I am glad to say the headache wasn't bad today.  I worry when it is.  A bad headache is what precipitated the scary chain of events at the hospital in April.  To be fair, Marlon is nowhere near as weak as he was back then.  He is much healthier. For a while this afternoon, I was weeding in the garden, Marlon was sitting in the shade listening to his audiobook, and Mojo was supervising. Not a flattering picture as he looks much fatter than he really is, but I liked the crossed paws. Marlon also went for a short swim but the water was cold so he didn't last. At one point today he was talking to me about planets, the sun, and black holes.  He was quite knowledgeable.  Happy to see he does retain a fair bit of what he listens to on podcasts. He folded another origami penguin.

Both Linsy and Marlon came to Guelph with me this morning.  It is expensive bringing Marlon along to the market as he asks for so many different things.  Oh well, it was nice for us to go together again.  With walking, Marlon's head would pound.  Over the course of the day, the headache was there if he walked more than a few steps.  I know now this headache is a result of the last chemo session.  Very uncomfortable thinking about that.  And I feel concern as well.  If he starts maintenance on Tuesday, he will be getting a lumbar puncture which will be injecting more of that chemo drug into his spinal fluid, heading up to the brain.  I really don't want that.  I can hope his blood counts won't be high enough to go forward and I will also be sending an email, asking for another week. Other than his head, Marlon is fine and in good spirits.  He decided a little while ago he wanted a new baseball cap.  We have about four here but h...

After he got over his initial sick feeling this morning, Marlon had a pretty good day.  He did have one disappointment and that was finding out that his weekend Minecraft friends won't be around.  He had really been looking forward to showing them some new things he's learned. Dracula and a dragon's head. My sisters were in the area, visiting Pamela's daughter and family at their cottage.  They stopped by for lunch.  A nice visit as it has been a while since I have seen Pamela. Afterward, they came along and saw the puppies before heading back to Ottawa.  Marlon was surprised at how small the puppies were and was happy to see them.

Mama Rosy had her puppies last night. So exciting!  Linsy and I went to see them today after heading into Guelph.  I told Marlon I will take him tomorrow. The other exciting thing, is that Marlon folded an origami 'ancient ghost'.  It has been a couple of months since he has folded anything other than folding boxes and the occasional crane. Hard to tell by looking at it, but it was a fairly complicated fold. On and off the past couple of days, Marlon has mentioned having a headache.  Not a bad one but it is aggravated by movement.  'Drink, Marlon, drink!'. A common refrain heard around here. 

Other than the fact that he threw up first thing, Marlon was feeling pretty good today.  The first thing in the morning vomiting, is often before food and drink so not much comes up, but it is insistent.  After that, I couldn't keep up with his appetite. Breakfast, snack, snack, lunch, snack, snack, and then he convinced me to buy him poutine again.  I was telling him we need to start making our own. This afternoon, we went to visit Rosy, a pregnant dog.  Linsy's boyfriend's dog.  Speaking of pregnant dogs, our neighbour's dog just had pups today.  New life!  After our visit, Marlon waited in the car while I ran into Sobeys and we picked up his poutine.  A little outing. Marlon likes to 'jiggle my fat'.  Flapping my arms and patting my belly.  Tonight I tried to reciprocate and bang his belly but he practically hyperventilated, he was laughing so hard.  'I'm super 'ticklative' A pop of colour. I was given flowers when we visited Ros...

Before we left for the hospital this morning, I went and got a club sandwich for Linsy and Marlon.  He was so happy with that.  It served as breakfast and lunch. After sitting around and waiting, we heard that he did not need any blood products today.  His counts were on the low side but not low enough to warrant transfusions.  Free for another week. On the way home, we stopped by a neat store called Grasshopper.  They sell South American/ Mexican pottery and clothing and more.  It is all outdoors, kind of market style.  We didn't buy anything but I was happy to finally check it out after driving past so many times. When I look at the picture on the left, it could be Marlon a year ago, but it is Linsy.  Our in-house hair-cutter and the person who can do anything, Thomas, gave her a great summer cut.  When Linsy was younger, she had fine, straight, blond hair.  The boys both had lots of hair.  With puberty, Linsy grew into a full hea...

Marlon threw up first thing this morning but luckily he has been feeling fine the rest of the day.  Not long after breakfast, he was hungry and asking when I would get his club sandwich.  Just as I was about to call and order lunch, I said 'What if they aren't open on Mondays?'. Marlon said of course they would be.  Unfortunately, I was right and they weren't open.  We looked at another restaurant and they don't open until later.  That was it.  Marlon cried and cried for a long time.  He said his whole day was ruined.  Eventually, he calmed down and I heated up a frozen pizza and he was ok.  Hopefully tomorrow. Linsy and I went to service Ontario in the afternoon to get her certificate for driver's education.   I was picking black raspberries, and the beautiful red leaves, so out of place this time of year, made a nice contrast. Back to the hospital in the morning.  Hopefully, a quick visit,  just checking his blood counts...

Can't keep up with this boy and his demands for food.  Always something different.  Today's request/demand was a club sandwich.  I did not get him one, but I think he has decided I will tomorrow.  I also have strict orders to get more green beans.  He's not even on steroids and everything seems to be about food.  Oh well, at least he is willing and able to eat.  He can stand to gain a few kilos. Speaking of food, I needed a new toaster oven and so I got one with an air fryer.  Used it today and cooked potatoes with it.  They turned out pretty good.  Even Marlon thought so. I appreciated the rainy day to get things done inside.  I would expect my house to be spic and span and neat and clean but I can't seem to get close to that reality. This evening, Marlon and I did drawings together, following online instructions.  These are his.

So far, he is adjusting to the latest round of chemo better than I expected.  It could still get worse but maybe not.  Ya never know. The other day, Marlon asked me to go to the store to get him corn on the cob.  It's not quite in season yet.  He still hasn't had the corn but he's also been wanting cooked green beans.  We scrounged a couple of baby ones from the garden but that wasn't enough.  His request for me this morning was to get green beans from the farmer's market.  He didn't care about anything else.  So for lunch and supper, he had a plate of cooked green beans asking with other things.  He was happy about that.  And I am happy to see him enjoying vegetables. He played Minecraft with friends this morning and his brother this evening.  That worked well.  At one point I saw him with his phone and told him to put it down.  He told me he was reading.  Right, he has an eBook. Both last night and today, Linsy was ...

Today was one of those days where every time we looked at the clock, it seemed at least an hour later than expected.  Luckily, we didn't have much planned. Linsy came home in the afternoon but ran out the door minutes later to get to work on time.  Sounds like she had a nice time away and is happy to be home again. Marlon was pretty good all day.  He didn't do much but his spirits were up. Other than the fact he was dissatisfied with supper, I don't think he had any complaints.  Minecraft and Mastermind time with Paco.  Yesterday, I played mastermind with him and I was looking at the picture on the box wondering if it was an original from the 70's. I'm not sure if I gave the impression that Marlon is done with chemo.  No, far from it.  He will have pills to take at home, a monthly dose at the hospital, with lumbar punctures at some of those visits.  The hope is that none of these are as invasive and weakening as the rounds he has been enduring. On...

It took Marlon a while to fall asleep last night.  The day's chemo had definitely caught up with him.  Lying down felt worse and he was nauseous and uncomfortable.  Eventually, with extra pillows propping him up, he fell asleep.  He did throw up in the morning and is worn out by feeling so bad.  He is done with all this.  Luckily, he does have better times when he is feeling ok, and not so drained by the treatment.  All things considered, the rest of the day was pretty good.  He was able to eat some, didn't throw up anymore, and his mood was much improved over the morning. The cat was needier today so I gave him extra lap time.  Probably missing Linsy.  It works well to be with both Marlon and the cat at the same time. We were playing with geometric shapes.  He prides himself in having a good sense of shapes and being able to see the outcome before putting them together.

Last week, finger poke was slow and took us over an hour for Marlon's turn.  Today, we walked in, waited a couple of minutes, poked for blood, and on up to clinic.  The nurse at finger poke did say she had seen lots of kids already.  True, the clinic was full.  We were given a pager and told to go 'elsewhere', waiting room, cafeteria, a walk…  We waited 2 hours and then the pager told us we could go to the ward.  It was still over an hour before the chemo was administered and we were set to go.  A lot of waiting around. Shortly after we got home, Marlon went for a swim.  This evening, I asked him how he was and he didn't seem to be doing well.  I was concerned he was already feeling the effects of the day's chemo.  No, he was just bummed about a game he plays on the phone.  He 'died' twice and lost a lot of 'money'.  If that's all it is, he'll live to see another day with highs and lows… I was watching a bug on my arm and then ...

Paco worked today but on his lunch, he went and got a door for the car.  The parts were used to fix the handle and now we have a stylish patchwork car that will hopefully last a little while longer. The tape will be removed. I keep expecting Linsy to come home and then remember she is away. Marlon got his Kiwico box today, put it together but perhaps not carefully enough.  He had air in a tube so it wasn't working.  Unfortunately, this monthly box is no longer something he appreciates nor has the patience to assemble carefully. He is enjoying the little time he spends in the pool.  And has discovered e-books he can borrow without waiting.  He has been waiting for one of the Percy Jackson books from the library.  It has been a long wait but now he has found them on hoopla.  Free and no wait time. Sad to be heading back for more chemo when the effects of the last round have finally passed.

On the weekend, Marlon has friends that play Minecraft in the mornings.  Today was a long one.  It's no wonder that halfway through the afternoon, he was surprised by the time.  Still, he flew the drone and had a swim.  He was commenting that it is a good strengthening exercise to be in the water. Linsy left today for a cottage with her friend.  She is happy to get away.  Glad that school and her driving test are behind her. Marlon and I even played frisbee tonight.  I get so frustrated.  I don't get any better and the frisbee rarely goes the way I want it to.  I did have a short phase last year that I was throwing fairly well.  No more.  So I go running back and forth, chasing the wayward frisbee because Marlon doesn't have the agility or stamina.  Still, it is fun. A bean beetle going after the unripe black raspberries and the evening sky, dotted with clouds.

What a quiet day compared to yesterday.  Up and down. Because he needed the blood products yesterday, Marlon didn't get the chemo he was scheduled for.  He will get that on Tuesday.  A few more days to continue to feel better.  And he is.  The waves of sickness are fewer and less intense.  He was noticing today that he is weaker than he used to be.  Hopefully, that will motivate him to do more to get in shape.  All in time, I suppose. I saw a butterfly trying to fly.  I don't think the wings were properly formed and it tried but couldn't get off the ground.  Sad to see.   The shirts seem pretty good. They faded a little with a wash but still look good.   Back when he still had hair to play with.  He doesn't plan on having long hair again now that he has experienced the ease of short hair.

I had a busy day planned.  To the hospital with Marlon, home, and leaving again for Hamilton with Linsy no later than 2.  Ha! When Marlon's blood counts came back, his hemoglobin was 69, just below the 70 cutoff.  His platelets were 23.  When I was told he would need platelets and red blood, I panicked.  That is an extra four hours at the hospital. So I thought Louise could maybe stay with Marlon and I go get Linsy.  First of all, that was not allowed, and second of all, how was Louise to drive me home and be with Marlon?  Then, I thought Paco might be able to take Linsy down.  I was imagining her driving and knew that was illegal.  No, can't do that.  As I said, I panicked and was not thinking straight.  What ended up happening was Paco drove Linsy down and they got to the hospital just as Marlon and I got outside at 3.  Paco went back with Louise and Marlon.  Linsy and I drove around and got to the drive test center with...

Last evening, I was outside playing with Stella.  It has been a while since she has done anything other than behave submissively with me or run away.  We were playing chase, with sticks, and sharing some wild strawberries.  I still had my headphones, as I ran out of the house when I heard she came visiting.  At one point I saw her noticing my headphones, dangling around my neck.  When I came back in, I noticed they were gone.  I went back outside and walked around and around, back and forth looking for them.  No luck.  Today, Paco was around and I mentioned my lost headphones.  Within a minute, he located them in the grass. Apparently, Stella found them before we did. It seems crazy to be celebrating a day without throwing up but it is a good occasion.  While writing this, I hear many fireworks signifying other's national birthday celebrations.  Before supper, Marlon was saying he was so hungry, but I am still surprised how little h...