Lovingheart

  We had the quiet day we anticipated.   The morning nausea wasn't too bad and Marlon felt fine after yesterday.  He did sneeze a couple of times but no sign of any more than that   One of those non-descript days with a bit of this and a bit of that.  Puttering, cleaning, and laundry.  Marlon got a new audiobook so he was lost in that.  He never even went outside.  I did get out and was also in the car three times driving Linsy around. Just before supper, a man came by to pick up the pump for the feeding tube.  I hadn't realized it was rented and we haven't been using it for a while anyway.  Time will tell if we need it again. It was bedtime and Marlon realized it was Halloween.  No big deal as he had given up on this day near the beginning of this journey.  He didn't care about much except maybe some skittles.  We were reading up about the Hunter's micro, blue moon that was tonight when Marlon said he was feeling sick and needed ondansatron.  When he says that I do

 I  keep hoping not to have to give Marlon the anti nausea medication, but once again in the morning, he is asking for it.  He feels he needs something before he can even contemplate food. Last night, I thought it would probably be better if we stayed home today and had a quiet day but there was something Marlon wanted to do.  He did not want to stay home. Shortly after lunch we headed off to Elora where they are having Monster Month.  Downtown is decorated with all sorts of monsters.  All white, looking like wire frames with a sort of paper maché coating.  In town there is also a scarecrow contest.  A couple of families met up and we wandered, admiring the ghoulish monsters, only seeing one 'scarecrow', which Marlon called Bunnicula (he has read book by same name). By the time we were done, we were both chilled.  It was wet and windy and I do think it was too much for Marlon.  I kept checking in with him, but he insisted he wanted to continue, and when he said he was done, we

  Marlon woke up the morning and needed to use the washroom.  Good thing he did as Paco was late getting up for work.  I woke him up just as his alarm clock went off (set for wrong time). The usual morning nausea for Marlon.  I am surprised he still feels sick in the morning since treatment has temporarily stopped. The origami butterfly had him stumped yesterday.  We each did one today. After lunch Keagan came for a visit.  We went for a walk and then they hung out for a while.  Es and I collected greens and talked.   Two days in a row we had visitors.  What a treat. Marlon is always tired by the evening but thank goodness he is sleeping well.  This evening he was quite emotional with a lot of tears.  He feels he has lost so much.  Lost a lot he holds dear, his physical strength, endurance, flexibility, and speed.  He thinks ahead and sees more treatment, more discomfort.  While I tried to remind him how far he has come and that he can be like he was before, he was feeling quite dishea

 I  am surprised how much Marlon walked today! In the morning he finished the audiobook he started yesterday and then almost immediately restarted it. He did some math work, quite a while since he has done any schoolwork. He also did some more origami while listening to his book. I figured I better get him moving so I convinced him to walk to the mailbox with me (return trip just over 1/2 km).   Later in the afternoon, a friend came to visit.  We all stayed outside together and walked a fair bit before Marlon and Ariadne plunked themselves on the ground to draw together. When we got back inside he was still ok.  Watched videos and played Minecraft.  Supper, relaxing, and bed. An amazingly full day and he wasn't nearly as zapped as he has been previously.  What a difference: having no chemo and rebuilding. For my part when I had a chance I listened to the music of Buffy Sainte-Marie.  After finishing the book I am inspired to hear more of her work. Strong messages and a beautiful vo

  Definitely not the day nor the outcome we expected. An early start to the morning to aim to get to the hospital for 730.  We did pretty good with that respect.  I undressed and dressed Marlon while he pretended to be asleep.  For the drive, he rests against me.  So tired. Finger poke and then go to clinic with the assumption he will get his chemo and be sedated for the lumbar puncture.  The clinic was all decorated for Halloween week.  The theme is construction and the nurses and helpers are all dressed as construction workers.  We were very impressed. The wrecking ball of the crane, a door covered with a tarp, the construction tape. There was a wall decorated with a bristol board bulldozer. The door to washroom decorated as an outhouse (Royal Flush). Another door decorated as a food truck. Danger and construction signs all over. One of the signs read 'Danger due to no caffeine'. Wonderful creativity and humour. Each child at clinic in the week will also receive a treat bag.

This morning I heard Marlon say he was bored.  I was happy to hear it.  For so long now he has not been well enough to really feel bored.  Then he decided he was going to teach me to make an origami crane.  I made one, kind of messy but it worked.  Moira pointed out that in Japan, origami cranes are symbols of healing and are given to sick people.   Yesterday Marlon said he wanted to see a friend.  I had planned to go into Guelph today.  While I ran my errands he got to hang out with a friend.   Time with a friend.  One thing they did that Marlon enjoyed was molding wax.  This is his warrior with big boots.  Last minute I decided to stop and get curry cashews from a friend that sells nuts and things. Her son is one of Marlon's friends as well so they chatted for bit.  Luke helped Marlon name his wax figurine, I think the name is 'Ootsbay'.  Pig Latin for boots. We stopped to pick up a couple more things from the store.  Getting  to check out and I remembered lettuce.  '

Going back to yesterday's comment about my job being Marlon right now.  As Moira pointed out to me, while I am at home I am so much more.  I gave Linsy several drives, I worked in the garden, I split wood, I cooked, I cleaned…  In the hospital, it is so much easier to give him my all.  At home, I do what I do at home AND I am here for Marlon. What and how much he needs changes all the time. He seems to have moved beyond that time when every step or movement is premeditated.  You know those times when you're feeling so sick or tired that even to go to the washroom takes all your might to make the trek.  That is how he has been for quite a while now. Today there was more freedom of movement. I saw him bend down to plug in the stereo when every other time he would ask me to.  He gets down on the floor and back up again. He will wander into the kitchen and just go here or there.  A couple of weeks ago sitting upright and holding his head up seemed like too much effort. Today Marlon

Once again Marlon was feeling quite sick when he woke up.  So nauseous that he did throw up and he hadn't eaten anything yet.  And he had gone so long (over a week) without throwing up.  Oh well.  The rest of the day though went fairly smooth. He didn't do or move much.  I totally understand that when you are into a good book there can be little motivation to do much else.  His legs still hurt him a bit. At one point he dropped a few cds on the floor.  He asked me to get them for him because he can't bend over.  I made him pick them up himself.  I do see he is expecting help and not even trying.  I was remembering the time before he entered the hospital and were going to doctor's office in mall and I knew how much pain he was in.  I thought it might be nice if we could borrow a wheelchair.  He scoffed at the idea.  He wasn't that bad.  Getting the diagnosis have him the permission to give up pretences. Midday, I asked him if he wanted to join me to split some kindli

Marlon finds waking up at 8 early.  But just wait until tomorrow when I am allowed to sleep in, all of a sudden he'll be up earlier.  Nah I doubt it.  He likes his sleep.  We were speaking with Nancy, another child life specialist, today, and came to the subject of the steroids and I realized in retrospect just how crazy-making they are.  I had heard about the emotional ups and downs and also the food cravings.  One thing that was glossed over was the sleeplessness.  At the time I saw many reasons why he wasn't sleeping well but now I see it was the pills.  Thank goodness he gets a reprieve from them  The drive this morning was very foggy but pleasant enough.  Finger poke again and shortly after we got to clinic we were informed he was to have another transfusion.  If the red blood cells go below 70 then they give transfusions.  His was 72 but considering we are going into a 3-day weekend and the week of treatments behind him they felt it was necessary.  Didn't take as long

The day didn't start too well.  Marlon couldn't get out of bed and was crying because he felt so horrible.  Nauseous and overall ick. Finally got him up and dressed and to the car.  We cuddled together during the drive some more.  No breakfast again. The hospital was a quick in and out.  Two hours of driving for a five-minute visit to get the chemo.  In the hospital for more than 5 minutes but not long. He was still feeling nauseous the whole time with no appetite.  When I see him with no appetite I feel nervous. Not wanting to go back to the feeding tube but it always looms as a threat (possibility), especially if he can't eat. In the afternoon he got set up on a Minecraft server with some friends and really enjoyed playing with others.  I was happy to see him get the chance for that.  Problem was that Paco and Linsy were at the table with him trying to do their school work.  Paco found it hard to maintain his focus so we will have to switch up the 'seating plan' a

 M arlon woke up on his own this morning so a little bit less grumpy.  Instead of eating breakfast though, he sat and wiggled a loose tooth.  No way he could eat with a loose tooth.  Playing with the tooth and talking away about how loose it is and it wasn't that loose yesterday.  We rushed out the door as soon as Louise got here so that we could give Linsy a drive to school rather than her walking in the pouring rain.  Marlon couldn't eat in the car because of the motion. Sometimes there is a line up to get into the hospital.  There are two booths where the employees do the regular covid screening and verify your 'right' to be in the hospital (inpatient or appointment or whatever).  We typically don't answer the same questions every time because we are going so often.  Today the line up was a bit delayed but then we got in, and the elevator was ready for us.  We checked in at the clinic and went in and that is where all the people were.  Never have we seen it so fu

Marlon felt like he was being woken up very early but it was almost 8am.  He had a good cry and cuddle before he was ready to get in the car to head to the hospital. Finger poke, then to the clinic.  They check 3 main parts of the blood: RBC, aka red blood cells, platelets, and neutrophils. All of his levels were low and we were told he would need a transfusion.  He will get another finger poke on Friday to check the platelets to make sure he doesn't need a transfusion of them. What that meant to us though is a long visit.  Start to finish we were at the hospital for close to 6 hours. While the blood was being dripped in, I agreed to go get Marlon Subway for lunch.  His appetite has been quite low the past few days so I would have gotten him whatever.  When I came back, the power was out.  There are generators for things like lights and certain outlets.  Some lighting, so we weren't in the dark.  Actually it was relatively quiet. For a while there was another young boy also get

A better night.  The cat didn't disturb our sleep! The others woke up too early but we can't blame the cat. It really felt like the fall rainy day it was.  A home day.  Marlon finished two books, one audio, one print.  We played a game of battleship that he received the other day.  It's hard when your can't read the letters and numbers.  We were part way into the game when I realized I got the letter side and number side mixed up so we had to start over.  Oops! The headache is still there and at times stronger than others.  I did try to buy tylenol yesterday but when I looked I was so overwhelmed by the choice that I didn't get anything.  He did move a bit more today but another day where he didn't leave the house. At bedtime it was a bit of a rush because I was taking Linsy to skating and needed to leave by 9.  Based on how well Marlon did with me rushing him to bed and then out the door while he was still awake, I would say he is doing ok.  Will see what tomor

Trying a new barricade to keep the cat out tonight.  Not a restful night.  He jumped up again and again.  Then I heard him settle elsewhere and thought 'Phew, now I can fall asleep'.  I hadn't even fallen back to sleep when I heard Marlon's voice, 'Mom, my head is hurting so much.  Can you please come lie with me?'  And that is how I spent the rest of the night.  We did both sleep, and I still had to turn the cat away several more times.  And yes, the headache persisted throughout the day.  Worse when he moves so he didn't move too much. Paco visited with a friend yesterday and they gave Marlon a big pumpkin.  He was soo excited about the size of it. Es had been planning on dropping by for about a month and one thing after another has stopped the visit.  With Marlon's headache we almost cancelled but he really wanted to see Keagan.  So the two boys that haven't seen each other in so long had a relatively distanced visit playing the Switch together. E

That darn cat!!  At least three times in the night I was awoken as he wormed himself onto the bed with Marlon. There is one spot that isn't very well protected against his advances, and Mojo uses it well.  I have a crinkly plastic bag there.  In the middle of the night I wondered what that noise was.  By the time I figured it out and got to Marlon's bed the cat was happily purring and snuggling up against a human body. I think partially because Marlon is so weak, the cat pushing against him is very uncomfortable.  The other morning he cried out loud as the cat  climbed on his chest and it hurt.  Mojo kept trying.  I did get used to the noise and was then just shooing him away.  Here he is capturing the patch is sun. At least Marlon slept well and I did too other than those interruptions.  Last night I thought that Marlon's headache was gone but it was not.  Just much worse when he is moving and walking around.  Sometimes if he is sitting quietly he feels like it is gone but

I was awake this morning getting ready for the trip to the hospital when I got a message from Peter asking what time we leave.  I realized then that he had intentions of seeing us again.  Sure enough less than an hour before we were due to leave he came by.  Even after the goodbyes yesterday he wanted to have a bit more time to assist Marlon with his breath.  Peter believes strongly in the importance of proper breathing.  From what I have seen, Marlon could really benefit if he would use his breathing to his advantage.  However, when he woke up this morning he was in tears because his headache was even worse than yesterday.  He felt horrible all over.  I don't think Peter got a chance to be with Marlon much this morning.  To be fair I did warn Peter that Marlon is not receptive to much when he first wakes up. Once at the hospital he did agree to take some Tylenol.  I think it did help a bit and the headache eased up.  Hopefully it is done for now - headaches can be a side effect of

 ' Mom, why do I have to feel so sick?!?'  Those pleading eyes. Please fix it for me.   The headache was still there when Marlon woke up this morning.  Today's rainy drive was so much different from yesterday's bright, sunny one.  At the clinic they suggest Tylenol for his headache which he said no to.  So Judy said some people find that caffeine helps.  Before we left, I bought Marlon a hot chocolate and added some of my green tea to it.  He enjoyed the drink but it didn't change his headache at all.  When we got home I gave him some kombucha as well.  After one sip he was nauseous and hanging over the container.  He retched and gagged over it for quite a while before everything finally did come up.  He didn't feel any better.  Just kept throwing up until he feel asleep. I had planned to go into Guelph to run a few errands.  He said he didn't want me to go.  After he fell asleep Thomas agreed I might as well leave.  Perhaps we were thinking he would have a

 A beautiful day for a drive. Thank goodness, because the first part of the day was all about that.  Time in traffic and then a slight detour, the scenic route, to get to the hospital.  The visit was so fast! Went in, she pumped the chemo into Marlon, we said he would prefer not to have the tube put back in, he was weighed and we were let go.  Back tomorrow.  Again Louise took the scenic route home, to avoid the troublesome intersection.  Bright sunny day, beautiful trees in all their fall splendor. The decision not to have the tube reinserted came early in the morning.  Marlon was dreading it but bound and determined to have it in so he wouldn't have to deal with all the pills.  At this particular time he isn't taking as many pills as he had been.  When I explained to him how many pills, he eventually realized the discomfort from the tube is not worth it for 3-6 pills a day.  As long as he is eating and drinking sufficiently the team is fine for him to be without.  All the ha

This morning I was celebrating Marlon having three days without throwing up.  What an accomplishment! I did have to wake him up to get out the door for our trip to the hospital.  He gets very grumpy when he is awoken. The appointment went well, had the chemo, met with some team members (physio, dietitian, doctor, several nurses), and then went for the sedation. I don't think I will ever get used to that.  You see the creamy, white liquid being pumped into his port, he may try to say something, his eyes flutter, and he is asleep.  So fast, so easy and so eery. Because of the sedation he hadn't had anything to eat or drink and was hoping to get a fast food burger after.  He didn't waste time once we picked it up with Louise in the driver's seat.  He enjoyed his food.  After a while he said he was going to be sick.  Oh no.  Bent over the container and then he is calling me and he basically spits out his feeding tube.  Yikes. In my style, I panic, and though we are about ha

During the night, on one of his trips to the washroom, Marlon commented on how lucky we were to have an extra family member with us to celebrate Thanksgiving when so many aren't able to during these times.  Sure it wasn't to be the big dinner at my sister Olivia's but we would still have a good meal. And we did.  After breakfast which was the baked apples Marlon had requested, he wanted to make a pumpkin pie but since we didn't have a pumpkin, we settled on an apple crumble.  He looked at the recipe I have for a 'press' crust and was looking at what to do and then that was about all he did for the day.  He walked back to his chair and said he couldn't help out after all.  His legs were sore and he had no energy.  I was not expecting much energy wise from him today after the full day yesterday. For the most part, he just sat and listened to audiobooks.  The rest of us all helped to make dinner in one form or another.  We also did some things outside.  A pleas

  We did it!  Marlon went apple picking.  The most normal (and also abnormal) thing he has done in a long time!  So nice to do something outside.  I think today he was outside longer than he was all of August days together.  He walked more today than he has in a couple of months.  We did have a wheelchair and he got pushed a lot but I was surprised to see him on his own feet too.  It was also nice to see family members we haven't seen in a while even if we did keep our distance and not share hugs. Afterward, Marlon, Linsy, Peter, and I went out to eat. And Marlon ate.  So exciting and so normal and so different for him.   Very early this morning Marlon was concerned and thinking he may not be able to make it out today.  He was feeling pretty rough but a bit more sleep and he was ready to go.   A full day and by the end Marlon had a headache, as do I, but he is looking forward to having baked apples for breakfast. Before we went out and after we came back Marlon was also very happy

  How quickly things change!! Even though Marlon had several naps yesterday, he slept well last night.  Best in a long time.  When he woke up he was grumbly and saying he felt horrible.  In a short while he said he wanted something like a croissant or cinnamon bun. I got him something and he ate it and enjoyed.  He had another popsicle.   Talk of discharge came about and it was decided Marlon was good to be sprung today.  Yay!!  Not long after that Marlon took a bit of a nosedive but not that bad, just low.  He made it through the whole day without throwing up. That is a big deal.  He thought he would several times but stuff stayed down.   They checked his blood, it seemed ok. They checked his urine and noticed a trace of blood but perhaps it was just remnants of whatever it was the day before (they aren't sure).  Marlon's uncle, Peter, came and picked us up.  Marlon was nervous about the ride, about leaving the hospital, about going home, about feeling worse again.  He did wel