Lovingheart

A scheduled visit to the hospital for chemo.  Though the chemo itself only took about 5 minutes to administer, we were there two and a half hours.  Waiting time.  A break for another 10 days.  His neutrophils were back down to 1.4 so whatever he was dealing with on Friday, has passed. He still limps along and though he says it doesn't hurt, he looks uncomfortable.  From the weak foot which is from the hematoma against his spine. We gave the drone a day to dry and it seems to be ok. I also emailed the company and they responded promptly asking for more info.  Promising.  We'll experiment more tomorrow. Took our car in for the third time in a couple of months.  Eleven years old and falling apart.  I have spent $1500 on it and it is barely even worth that amount.  Gotta love cars.  Grateful for them but they aren't cheap. Nature's way, plant growing up through a piece of wood, nicely centered.

Marlon was feeling more himself today.  Doctor called from the hospital to check in on him.  I asked about his neutrophils being above normal.  I found out that means he was dealing with something.  I was happy to hear that his body now had the ability to fight infections on its own.  Hopefully, with the worst of treatment behind us, his body can continue to maintain health. The worst part of the day was the drone.  At first, he got it caught in a tree.  Paco got the ladder and was able to get it out.  After that it wasn't flying properly, Marlon lost control, it banged into a tree and landed in the stream.  Several warnings tell us not to get it wet.  It was completely submerged.  Marlon was crying and crying, upset about the bad luck he has had.  Sickness and now the drone.  The waste of money and he barely had a chance to even fly it.  I noticed that with all this crying there were not a lot of tears.  It seem...

Marlon slept well last night but still wasn't back to the most recent normal.  Very little appetite which after his big enthusiasm towards food is a noticeable shift.  Even food he asked for, was mostly untouched though he did eat some. His new drone arrived but it took until afternoon for him to look at it.  By evening, the wind had died down enough to take it out for a fly and he was very happy with it.  We'll try more tomorrow. Before bed, he was listening to the Wellerman over and over.  He figures he had listened to it about 100 times. Feeling ho-hum but so glad we aren't at the hospital. Nothing to do with anything… An egg with a mohawk

What a day! First off, Marlon was feeling nauseous and threw up.  No appetite and stuck to his chair.  The power was out for an hour and a half. Both Marlon and I were cold. Likely the house felt so cold because of the rain and snow.  The temperature was ok but when the power came back we turned the heat up.  I warmed up but Marlon didn't. So much snow.  My attention was taken up by the snow.  Big flakes and it just kept snowing.  There was an accumulation of a couple of centimeters by the time it stopped. Marlon wasn't feeling any better and when he told me he had a headache, I worried.  He had the seizures a week after the LP.    It has been a week now since the last one.  I emailed his nurse and after speaking with the doctor, we were told to go in.  As much as neither Marlon nor I were keen on going to the hospital, we did and no it was 430 when we arrived at emergency.  I did have to use the snow brush on the car to w...

We had our pie day today.  An outside pie and crust lesson with our neighbour, Alice.  I made blueberry/apple filling, and Alice cut up apples for apple pie.  We enjoyed the yummy results. Marlon is also holding a pie but only for the picture.  By this time he had been on his feet for an hour and was definitely ready for a rest. I bought several books lately.  Books Marlon was interested in reading that we couldn't get from the library.  One series he is really enjoying and the other one that is more of a struggle.  Had us talking about the difference between well-written books that get you hooked and then books that you read for a while but are happy to put down and not go back to.  Hopefully, we will be able to donate the less-loved books to the library soon. From the outside, you can't see there are two butterflies joined together.

Today was a special day growing up as it is my parents' anniversary.  Another opportunity to give thanks for the privilege of having two parents that loved and supported each other. This evening, Marlon and I were talking about croissants which led us to languages.  He was marveling at how confusing other languages seem to be.  I suggested he gets a project.  Learn a language.  I would like him to learn proper typing.  Learn to play an instrument.  His answer to all this is 'no', he can't do it.  It is boring and he won't do it.  I then feel sad.  Sad to see that energy of giving up before you get started.  And sad to see that in myself as well.  I am sure we all have traits we don't love and it is painful to see those carrying on in the next generation. He was lucky to have a good Minecraft day.  Some time with his brother and then a few different friends. Marlon is a good reader and his spelling is pretty good too. ...

Paco took the day off today so Marlon got a good dose of his brother and Minecraft.  He was happy with that and I had a challenge getting him off the computer.   Friday, we were looking at the Sobeys flyer, and he saw cherries were on sale.  He wrote me a shopping list for cherries and a beer.  The beer is for the slugs though so far they seem to be on the wagon and are not enticed to swim in it.  Finally today he got his cherries.  He was happy with that and I had an excuse for a nice walk. We often talk about treatment, how he is feeling, the time just before and after diagnosis.  I imagine it is healing for both of us as there is trauma to be overcome.  The roller coaster ride continues. A flower with a leaf The flipside of the flower

As much as Marlon was a wanted child, I was a little concerned when I became pregnant and realized he would have the same age split I had.  I had more older siblings as the youngest of 5 but there was a 6.5-year difference between myself and the second youngest.  At first, I was accustomed to having siblings around.  I enjoyed board games and one thing I remember is practically pouncing on anyone as they walked through the front door, asking if they wanted to play a game.  By this time they were older, had busy lives, and little time for their younger sister.  I now count myself incredibly lucky to have wonderful siblings but at the time I almost felt like an only child. Paco is a good older brother and will do his best to make time for Marlon but he is busy working several jobs and taking a summer class.  For several days, Marlon has wanted to play Minecraft with Paco but he has not had any extra time.  I feel Marlon's disappointment. We were talking ...

The past several days, Marlon feels fine during the day, with good appetite, but by evening he is slowing down, more nauseous, eating little. His anxiety changes.  It used to be that getting de-accessed stressed him out and just before it was to happen, he would be anxious and wish it to be done.  Now that step is fine but the accessing is when he is anxious and cries.  For a while, he was ok with the pills.  Now he stresses more with the evening pills.  He needs to take breaks between pills and there is a push-pull energy to it. Last summer, when he was unwell and we did not know what was wrong, he was very uncomfortable being outside.  He said the sun was too strong.  Treatment can increase sensitivity to the sun, and Marlon feels it.  The heat and sun are hard on him and I was just realizing I need to get him outside more often but not expect that time to last more than 5 minutes.  I can almost see him wilt under the sun. We saw another tu...

I have told Marlon we can get another drone.  His job is to research a good one.  He is actually pretty good at this as he likes to read comments and reviews. There are some factors he misses but it is a good start.  The price varies from $20 to $500+.  He is adamant he doesn't want to spend too much but it would be nice to have one with a camera and then you wonder if you get what you pay for.  The other big consideration is that Marlon is not known to stick with anything for too long.  If it is too complicated, he will give up immediately.  If it is too easy, he will get bored.  My tendency, when faced with all this, is not to take action.  We'll see. He has one in mind but I suggested he look for more reviews. He is still craving poutine, so we are checking out various options close to home.  Picked up one today that was not very well-liked but there are several more choices.  Maybe one a week.  Depends on his taste buds and...

Made it through another hospital visit with more chemo.  Yesterday was two chemo drugs and today one more.  So many different cocktails injected in.  This one started with a dose of Benadryl so he was sleepy and tired.  To add to his tiredness, he had been waking earlier than usual for a week now.  He wakes up needing to go to the washroom around 630 and doesn't fall back asleep. No more hospital until May 31.  I would say no more chemo but every day at least one pill is a chemo drug.  While he was very sick during the past month, they even stopped the pill but now he is back on it. Unfortunately, the drone isn't working.  It just flips over on its back.  Darn.  Not sure if something got messed up while in the tree but it hasn't worked properly since.   Marlon did walk to the mailbox with me and that is the most he has walked in over a month.  Halfway back and he was sore and tired. For a while, he has been wanting waterme...

His neutrophils made it to the 0.5 mark so they started the next phase of treatment.  My overall sense of this is a good one because it means we are that much closer to him being in maintenance.  It is within reach.   Marlon is stressing more when he is accessed and there were a lot of tears today.  The smell of the cleaning fluid is bad to him and sets him off.  At the beginning of treatment, he found peppermint essential oil to be helpful when taking his pills, a distraction.  I think we will see if we can find a smell that will help now.  The stresses come and go. I don't know if there is any truth to this but I am hoping that if he feels the stresses now, the lasting effects won't be as bad. He was given chemo through his port and then sedated for the LP (lumbar puncture).  He is still having issues with his right foot, a result of a hematoma in that area likely caused by the LP's. I never thought too much about the LP except for the stre...

The other day, Marlon's friend gave him a drone.  It has been good exercise to practice flying it.  He walks around and bends over.  He showed me how he is handling it better. It was very high and close to a very tall tree.  It glitched and landed up in the tree, probably close to 100 feet up.  Thomas has a very long stick (was a tree) and I carried it over (that in itself is awkward) and we put it against the tree but it wasn't even close to being tall enough.  Then Marlon had the brain wave to just try and fly it out of the tree.  It worked.  Phew! He was listening to a podcast where they were talking about sea shanty songs.  He downloaded the Wellerman and has listened to it at least 20 times, over and over.  He was saying it gets stuck in his head so he listens to it to satisfy his mind. He has a lot of things lying around, toys and stuff, and I said we have to clear it out as he doesn't use most of it.  This brought on a lot of...

Once again Marlon's neutrophils were too low to continue with treatment.  Still at 0.4 and need to be 0.5.  His platelets doubled again and are 312, a far cry from 5 weeks ago when they were 1.  They will try again on Thursday. It was still morning when we got back from the hospital.  I am enjoying the nice weather and it is nice that Marlon can get outside easier but he can't handle the heat.  Last summer, when he was sick but before we knew what was happening, he couldn't handle the sun at all.  He prefers to go out for several short bursts. There were books waiting at the library so I enjoyed the walk there in the afternoon. Boat, knight's helmet, and a fox

I was feeling grumpy this evening because it seems every time I turned around Marlon was plugged into some device or other.  He did do some other things today but somehow I am hoping he gets inspired to do a bit more than he is.  Not sure with what or how. I also need patience. To be fair he did a few origami creations, went out with his RC vehicles, and threw his boomerang around.  The other day he caught the boomerang and he is hoping to be able to again!  Not very easy. He also wrote me a shopping list.  I feel that, during lockdown, I shouldn't be making so many trips to the grocery store but every couple of days there is something he just has to have. A pterosaur, angelfish, and box.

I was thinking how lucky we are we live in Canada.  I am not so sure we would have had medical insurance had we lived in the States.  Once again, so much to be grateful for. This afternoon, Marlon had a friend come over.  They kept their distance but played with remote control vehicles, both flying drones, and rolling land ones.  It was not a long visit but he was tired afterwards.  A rare treat to see a friend and be somewhat physical. His appetite is almost as if he is on steroids.  He is often thinking about food and eats a fair bit.  He gets a hankering for a particular food and keeps asking until he gets it.   This is from a year ago.  He calls it Playgo-mation.  Using Lego to create scenarios on playdough.

A peaceful, uneventful day.  No complaints there. Marlon has a good appetite lately and has all sorts of food requests.  Not always the healthiest of choices but not the worst either.  He was pestering me for pie, so yesterday I went to Sobeys and bought a blueberry pie.  Now I am thinking if he wants to continue to enjoy pies, we should try our hands at making pie crusts, something I have shied away from.  I continue to see his tastes changing day by day so I need to remember not to get caught up in what works today.  It will change. We have played some frisbee, never for long, but I know that will get better.  He was commenting today that he has played less frisbee than me but is better.  True.  Not something I have excelled at. After dropping Linsy off at work today, I saw a turtle crossing the road.  It looked very black on top.  Maybe mud? When I went to pick Linsy up later, I didn't see any signs of the turtle so I hope the eg...

Marlon helped plant carrots today.  Thomas commented that Marlon can get down ok to plant the seeds, but getting up is the hard part.  The other day the two of them were talking about getting up from the ground and how it isn't always very easy. At bedtime, Marlon asked what the point of life is.  This comes on the heels of an emotional day.  One where I was wondering what I am doing and feeling sad and when feeling sad the faults seem to be more noticeable.  Did I really say this? Do that?  Think this?  But I answer that we look for joy in life.  And Marlon mentions the two big C's right now and I respond that we can still do the best we can, look for the good.  And Marlon asked if people that littered were not being the best they can be.  What about the planet?  And the roller coaster of the ups and the downs and the good and the bad.  We all have a dark and a light side.  None of us are perfect. In a strange way that he...

For the past while, to deal with the various infections, Marlon has been taking several pills.  He was taking 8 of one split up three times a day.  I may have mentioned before giving him pills while he is sleeping.  Yesterday was the last day of that!  That particular pill, he will now be taking three times a week, twice a day.   I feel like the past couple of days have been definite steps forward of strength and endurance.  He can stay on his feet for longer periods of time and can walk up the stairs with only a little struggle.  He is sturdier. I have been reading a book to him and it seems every paragraph he interrupts for one reason or another.  The most recent part of this book talks of Greek gods and Marlon knows a lot about them so he always has something to say. Speaking of books, a while ago I was at the bookstore picking up books I had ordered for Marlon.  I saw a book I felt attracted to but knew I don't often find the time to...

Last year, when we were harvesting potatoes, Marlon wasn't able to help much but he pointed out that he planted most of the plants in the spring when he was still well.  Today we put some potatoes in the ground and Marlon was able to help.  I am sure he was slower than last year and ran out of steam fairly fast.  But still, he was out helping in the garden.  I am hoping he will be up for helping more tomorrow especially since there may be some carrots planted and he loves to eat them fresh from the earth. Mr. John Smith, and his sheepdog and some star fold. I liked the sideways picture. Walked to the library to pick up a book waiting for Marlon and he spent a long time working his way through it.  Always glad to see him read.

In order to proceed with treatment, Marlon's platelets needed to be 75 and since last Thursday, counts were 22, I figured no way would he be ready.  My certainty was a mistake as it gave Marlon an expectation that nothing would happen.  Shortly after finger poke, we were ushered into a room.  Normally one stays in the public area unless to be accessed, a checkup, or treatment.  At this point we hadn't been told much except his counts were good.  Marlon cried big tears.  He wasn't ready to be accessed.  He didn't want to proceed.  Finally, we were told his platelets were 151!!  A big jump, a good sign.  But his neutrophils were 0.4 and needed to be 0.5.  We were in the room to talk with the doctor. While in the hospital, we had been told his neutrophils levels should be at least 0.5 for Marlon to be discharged.  When he was let out on the 3rd, they were 1.2.  No problem.  I had in mind his levels last Thursday (6th) we...

Marlon didn't feel much better this morning until after he threw up, not that there was much to come up.  He still felt a little off but made it through the day and was able to enjoy supper.  One of his favourites, shepherd's pie (today's made with ground water buffalo). He played a fair bit of Minecraft, both with friends and his brother.  We were going for a walk but then we saw Stella so went and hung out with her and Josephine.  Marlon threw the frisbee a few times and said he felt it in his arm.  About a year ago, we would regularly go out and fling the frisbee.  Maybe we can get back into it again. After a few origami fails, he folded the cat.  There are times when it just doesn't work out.  Sometimes I will try my hand at it but there are some folds that leave us scratching our head. I don't know why this Minecraft pig is called ugly.  The other day he said he could draw a cow but it would look very similar to the pig.

Glad to be home for mother's day.  I don't place a lot of weight on these 'special' days but I am happy to be a mom and to have been blessed three times by the wonders of growing a baby, birthing it, and then watching the being unfold. I got a thoughtfully written card from Paco and a heart and origami box from Marlon.  I asked for origami flowers.  He thought they may be too hard but they turned out well. We went to Linsy's boyfriend's place to see the newborn filly.  Born yesterday and so gangly with those long, long legs and a gorgeous face.  To see the horse and foal we walked to the paddock so it was a good walk for Marlon.  And then also saw the head of a newly hatched chick, poking its head out from the safety momma hen.  Mother's all around. Marlon felt fine most of the day until evening when he had very little appetite.  Even then, he was still chatty and animated and I am sure he will feel fine in the morning.

Four years ago we had my mom's (MOMA - Oma with the M in front for mom) afterlife party.  Since I am uninspired for today's picture this is from then. Once again, Marlon didn't go outside but I think he had a good day.  Reading, playing Minecraft with friends in the morning and his brother in the evening, and other assorted things.  He was in a good mood and just more Marlon. Always nice to see.  Not a bad thing that there isn't much to say!

When Marlon walks, he is hobbling and limping along.  It looks awkward and almost painful.  He is not in pain.  His flexibility still isn't the best but I remind him, again and again, to walk normally.  It will come. He came for a little walkabout outside.  Equivalent to maybe three times around the house, and by the time we came back he was in tears. An attempt to make a hyperbolic paraboloid Closest he's come to doing a proper drawing in a while. A minecraft pig.

Marlon was stressed this morning at the thought of being accessed again.  We did not know ahead of time how things would turn out.  As it were, he did not need any blood products.  His platelets were 22, so down from Monday but above the 20 cutoff.  Hemoglobin and neutrophils continue to slowly climb.  A quick in and out hospital visit. Because of the hospital stay, his chemo is behind but next Tuesday he is supposed to start the last 8 week round of chemo before he enters maintenance.  To start, his platelets need to be 75, so it is very unlikely he will be ready to start next week.  He may get an even longer break again.  No harm in letting his body build up again.  Delayed Intensification is done but the next phase has a fair amount of methotrexate.  While I originally viewed it as milder chemo, I have learned more about it and am more concerned.  It is the doses of this drug that go to the brain that can cause seizures.  Ca...

I often remember the night Marlon was in emergency and the resident doctor (student) came on and she had a nice manner, seemed professional and comfortable.  Then when Marlon's heart rate was very high and his fever spiking over 40 and he was out of it and moaning.  She wasn't sure what to suggest.  She kept falling back on pain relief.  Several times she mentioned giving him painkillers.  I had no idea what he needed but I knew pain relief was not the answer, not even close.  The main doctor came on the scene just before Marlon had his seizure and started barking orders and taking action.  Having Marlon rolled to the other room, and asking for liquids and meds and blood products.  And I think of the resident doctor, knowing I would never want to be in that kind of situation.  I wonder how it was for her.  To feel so lost and out of your depth.  I relate as I felt that way, but I was not there to know what was going on. Another thin...

How quickly we put the hospital behind us and fall back into home life again.   Since we got back I have done several loads of laundry.  At the hospital, it was all handwashing so now making sure those items get a good wash.  Paco and Linsy were constantly fiddling and adjusting in an attempt to keep the cat out of Marlon's bed while we were away.  He was very persistent, jumping on the desk and breaking through barricades.  I made sure the bedding got washed as well.  In the middle of the night, I heard the cat start his burrowing onto the bed and tsk'd him away.  It worked.  His other favourite place to sleep is behind Linsy on her chair so she is often sitting on the edge of her seat.  Not so comfortable.  Here I just moved him from that spot and gave him a cozy alternative. While away, Marlon's Kiwico kit arrived so he made his animation machine today.  He is doing well.  Walking looks awkward but I believe his blood c...

Home sweet home! Marlon was in the hospital for 12 hours shy of 3 weeks. His recovery is continuing on a strong upward path.  His platelets actually went up to 25 today from yesterday's 24.  First time in a long time they went up without a transfusion.  This means his marrow is back at work again.  His hemoglobin (89) and neutrophils (1.3) went up as well. Instead of requiring us to return tomorrow, Marlon was given the chemo today and doesn't need to go back until Thursday for a blood check. Good to see everyone at home again.  It will be nice to sleep in my bed.   The drive home was emotional as I kept remembering the last time we drove down that road. Middle of the night and I had him beside me on the reclined front seat (he still sits in the back), so I could keep an eye on him.  What a change!  Thank goodness he is much more himself again.  He needs to rebuild his strength and his walk is awkward but he is ok. Silly boy

Marlon has been getting TPN, liquid nutrition through his port to help with the fact that he wasn't eating and then slowly reintegrating food into his diet.  Last night was the last of it. All the steps are falling into place for him to be sprung on Monday. One med, he gets one pill morning and evening.  The other he gets 2 or 3 pills every 8 hours.  This means he is woken up at midnight with his pills carefully hidden in 3 small bites of ice cream which he swallows.  The first night I was nervous, wanting to know for sure he was swallowing them and wasn't going to choke.  He barely wakes up but gets them down.   In the morning, they will check his blood and he will either get platelets or not and then be cleared for takeoff. Likely returning to clinic on Tuesday for chemo and then platelet check later in the week.  His neutrophils are continuing to climb. In the afternoon, Marlon sat in the wheelchair and I pushed him around.  Some trails, s...

Platelets this morning were still good after yesterday's transfusion and his neutrophils are continuing to climb, now at 0.9.  He did end up needing red blood cells as his hemoglobin had been slowly dropping over several days and today was at 70.  He has been getting headaches when getting up or moving much but today's transfusion helped that.   Results of the MRI show that the hematoma at the base of his spine, possibly a result of the lumbar punctures, is starting to heal.  His foot is still a little fuzzy and weak but his symptoms are getting better. While they aren't ready to discharge Marlon until watching the platelet counts for a few more days, they did say it will be fine to leave for a few hours on Sunday.  The thought of going home was mentioned but Marlon doesn't like the thought of spending a couple of hours in the car just for a visit.  When he goes home, he wants to stay there.   I may take him out for a spin in a wheelchair if ...