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...