Lovingheart

Not much to say.  I suppose that's a good thing. The big thing around here is getting the eaves trough replaced.  P has been working hard on it with the help of his dad.  In the winter the existing one came down with a crash, weighed down by ice. For the next week, I shall do updates only every second or third day unless there is something worth saying.

Marlon is walking three or four hours a day. Pretty amazing to be in cancer treatment and to be feeling so well and strong.  Then again, I know an older gentleman who barely changed his full, intense exercise routine when going through treatment. A mullein plant.  Not in its prime but still powerful.  Another “weed” that is also a healing plant.

I am scared Not scared for his life but scared for his suffering. I think we have all had times of seeing someone hurting or suffering and knowing there is nothing to do. We were going to Guelph today to pick up his laptop.  It has been overheating and needed a good clean and extra RAM. I made him join the dogs and I for a walk at one of my favourite places to walk in Guelph.  A nice loop with varied terrain.  He is happy to walk and walk, but grumpy when not on his own terms.  Behaving like a real teenager. Mina is reactive to other dogs and one of Marlon's tricks has been to pick her up and she is on her back in his arms.  He did that today and it was a little rough, not a good idea for his PICC line but nothing was harmed and the pump didn't beep at us.  He is still pretty strong, if not as strong as he was before.  A little tree stump along the path.

Not sure if it's the blina, the heat, or just life, but Marlon’s appetite has been off.  Not like steroids where he wants all sorts of food.  Not like when he's really sick that he can't handle food.  He doesn't want to eat much of anything.  Nothing of interest. He used to identify with his belongings as if they were a part of him and who he was.  I think that is natural for young kids(?).  Now he doesn't care and sees his books for instance as a part of the kid that he was and they are not worth hanging onto.  He hung out with a friend this evening.  For the next few weeks, while he is still feeling fine, he will have friend time.  He did even consider Wonderland but that was vetoed by the nurses.  Too many opportunities for sickness to get in and he does need to stay as healthy as he can leading up to the intense treatment. Good old lilly pads.  Just popping up.  Something so magical about the flowers floating on the water....

Another appointment today.  The opthalmology appointment.  This one has been changed several times but we finally made it.  His vision is 20/20 and he has been discharged from the hospital for his eyes.  The only reason he was seen by the opthalmology department in the first place is because of blurry vision when the cancer returned back in April. In the car, he realized his banana calculations from yesterday were off.  He was using a calculator and writing.  At one point, he got very frustrated and hit his hand.  It is hard to write when your hands are very shaky.  He couldn't read what he had written.  Another “project” not yet completed. No more appointments this week.  A lot of driving.  On the way there we took a slightly different route once again.  I rarely go the same route two trips in a row.  Just zigzagging our way southwest. Though they don't care if they swim in colder weather, the dogs have been making good u...

Hospital today for blina bag change and it came with some interesting news though not specifically about Marlon. The nurse let slip how much the blina costs.  Back when I saw the $4,000 price tag for one month's supply of the pill he takes daily, I became emotional and teary-eyed.   Today's information leaves me dumbfounded, emotional, angry, and so much more. Marlon took the information and ran with it.  How many bananas could he get for the cost of this drug?  151,200 bananas a week (assuming .40 per banana), or 40,320 big box store hot dogs, or a new pick up truck (he is very specific about the kind of truck but not naming names…).  A week!!  Just one week, and when all is said and done he will have had 8.  $250,000.  How crazy and backwards is our world?  Why? Marlon is only the second patient to get the 7-day bag but even the one that lasts 3 or 4 days that he had the first 4-week stretch are in the same price range.  And this ...

Dental work all done.  He had his last appointment today.  He has done well and not complained too much. He was happy to go to a friend's place in the afternoon.  Some time at the mall and at her place.  Both air conditioned.  He doesn't do well with the heat.  I know there are many out there right now that are struggling with the weather.  I was trying to catch a picture of an amazingly blue dragon fly today but it wouldn't stay still long enough.  Then I received a photo memory from three years ago today.

I will be put on the waiting list for the McDonald house when Marlon is at sick kids in Toronto.  I can stay in his room as well as I always did in Hamilton.  Once transplant is done, Marlon and I will stay at the house together for a while.  He is considered well enough to be an outpatient but needs to be close by for regular appointments and checkups.  But that isn't until September.  He is likely to be in the hospital for the month of August.  Sick Kids has a whole ward for bone marrow transplants.  Not only cancer patients but a variety of illnesses find a cure with transplants. For now, we have over a month with various other appointments including the blina bag for the next 3 weeks.  The dogs, like the rest of us, are doing what they can with the heat.  Pan is on the other side of the trees, in the water.  He loves to swim.  Mina, does not like to swim and doesn't love the heat.  Marlon enjoys swimming but will not be abl...

I really never thought we'd be back in this situation again.  Since the relapse I have times where I get caught on that treadmill.  How did this happen?  The cancer responded so well the first time around, I honestly believed it would never come back.  I remember the joy of being told treatment was complete.  So how was it that a few cancer cells hid out for so long.  And what revived them from that long sleep.  And then the minute the medical system throws their drugs at it, the cancer goes into hiding again.  That false sense of security.  Well, Marlon will endure and we hope that once again, he will be cleared and this time for good.  For now we take it day by day. Turtles are the big thing around here now.  Many are coming to shore to lay their eggs.  We need to make sure the dogs don't go after them.

Longest day of the year - most daylight. Not a bad day here. At first Marlon still felt as bad as he was feeling last night.  Even worse.  But he had some caffeine and took it easy and by the afternoon was mostly back to normal. Well whatever normal is right now. I think of someone I know who had a negative side effect to immunotherapy.  She feels a lot of potential hazards weren't property checked and documented.  The cancer treatment had too much of a laissez faire attitude.  That is one thing for the kids cancer treatments I have seen and that they assure us from sick kids.  They test overall health of organs and the system before the extensive treatment starts.  And continue to test and monitor for potential side effects.  They come at it from a worst case scenario.  And yet it would be nice to know best case or just average reactions. Still processing the information and feelings from the call with sick kids. We were gifted a supersized ...

As it turned out, Marlon only had to stay in the hospital for 24 hours.  As we were leaving yesterday afternoon I got a warning that the air pressure in the rear tire was low.  I was going to pump it up but then took it to a nearby service centre and I'm glad I did.  A nail was stuck in the tire.  Fixed with a patch and less than $50 and we were on our way.  Grateful to have a reliable car because we are doing a lot of driving. Today was the dentist.  He is doing well with the appointments with one more scheduled for next week.  Afterwards as he took a drink Marlon poured it down his front because the freezing impeded his senses.  He was pretty upset but I thought it was funny. We took advantage of being close by and went strawberry picking.  My sister met us there.  Marlon was good natured and helpful but then he was done.  Feeling the tired, achy feeling from the blina, recovering from dental work, and worn out. Luckily the rain s...

We had our online call with sick kids today to get more information about what is ahead.  Marlon, his siblings, his aunt, and I were present.  So much to consider. Hard to imagine. They are going with the 100% matched donor.  We don't get any information (except age which we don't know yet) about them until 2 years have passed  First off is radiation at the end of July.  Full body and the brain as well.  The brain because the cancer did present there when it relapsed.  Intense chemo and then the transplant.  All sorts of drugs and potential side effects are possible.  Feeling like garbage with zero immunity is a given.  Probably in the hospital for most of August and then out patient but close by for another 2 months. I like Marlon the way he is.  His brains and intelligence, his quirkiness, just him.  How will he make it through? Who will he be on the other side.  The chances are very high (98%) he will survive. Right now...

LP this morning.  Smooth process.  When we went down to the ‘sedation room’ there was a little boy still in clinic who was whining because he was hungry.  It is hard not being able to eat before procedure and the younger ones don't understand why they are being denied food.  Last time around there was a nurse just back from her own cancer treatment and she had a renewed appreciation for what they go through. I thought they often let the youngers go earlier but Marlon was not made to wait longer. Speaking with someone that works on the ward and heard there have been several new cancer patients in the past month.  Four that are quite young.  I also heard that the blina is quite widely used now.  Back when Marlon was first diagnosed it was still in trial phase.  Good results so it is used in various cancer treatments. Once on the ward, they moved towards restarting the blina.  A couple of changes this time around.  Positive ones. The conten...

Quiet day.  Sort of.  Knowing that Marlon will be admitted to hospital for a couple of days allows me to try to get as much done as I can in preparation.  The last couple of LPs Marlon has had have been pretty rough for a week or so with headaches and feeling low.  He doesn't expect much from the blina being reattached other than the inconvenience and a compounded low feeling. In general, he feels worse in the hospital. Picked some wild strawberries today. Yum

Today was a good day.  Weather was nice, Father's day, and dinner at my sister's.  Marlon and his brother rushed off before most others ate to go watch HaHa Halton, an improv group that P has been a part of with an entertaining show. My sister's dog is getting older and it was funny to watch her.  She spends a lot of time, in different places of the property, barking at some thing or other.  A sweet dog but she likes to bark.  Luckily their neighbours aren't too close and it seems her bark is not as loud as it was in her prime. Her peonies are in full bloom.  The bushes around where we live are bursting and only just starting to open.  The plant on the top left is wild rose which is an invasive species.  Beautiful big bush, with a faint sweet smell.  

When Marlon was visiting with his school friend, he learned his friends were going for bike rides during lunch break.  He went for a bike ride today as well as his walks.  Not a long ride but he was pleased with the result.  His legs were sore but he made it. He is working on one school subject and is waiting to hear about other ones.  The way he preferred to do it when homeschooling was one subject at a time.  Finishing the year's math work before starting on English.  Obviously in school for grade 9, he didn't have the choice.  Now that the next semester will be online, he is sayng he might like to do one subject at a time.  A year ago today, P graduated from UofG.  Mechanical engineering.  An emotional day

It's weird the way things are.  I can forget what we are dealing with.  A day at home, Marlon's energy levels are good, and he's feeling fine.  Then I remember that he still has his chemo drugs to take.  Right. He went to a friend's house today and they enjoyed their talks and hanging out.  He was happy to have that time but he gets to hear what he's missing at school and as much as he doesn't want to be there, he misses not being a part of it. Next Wednesday, we have a zoom call scheduled.  Still no word on the donor but I am assuming it is not one of Marlon's siblings otherwise I imagine they would have heard.  I took several videos from a good thunderstorm last year.  The sky, the lightning.  Such beauty

More dental work is done.  Pretty smooth process.  No complaints about his mouth. I always believed Marlon has a low tolerance to pain but obviously I don't know.  He has been through suffering with symptoms and then the treatment. I have taken a few quills out of Pan.  Ones that were missed.  If I can get a hold of them it is definitely better I take them out.  Another trip to the vet and he would go in fighting.  Some ask if he has learned his lesson and I don't think so.  If he saw another porcupine he would not hesitate to chase it.  Another special moon 

I suggested to Marlon that he could spend some time in the next couple of weeks getting started on next semester’s school work.  He isn't drained from aggressive treatment.  I had already been in touch with the school about next semester. It will need to be online.  Obviously we don't know how the recovery will be, but for several months post transplant, he will need to have limited social contact  Marlon has an idea of what he wants to do but the TVO ILC courses are only eligible for students that are not registered with a school.  A work in progress.  The school has been very good working with us so far.  At first I thought these flowers looked similar to strawberry flowers.  So many different white flowers out there.

We received a few more answers today but one was something unexpected.  Apparently, Marlon has the Blinatumomab for another four week stretch.  That news really upset him.  He had been celebrating all the ways life is simpler without being attached to the backpack only to realize he will be hooked up again.  This means that on Tuesday, he will have a lumbar puncture and then be admitted for a couple of days of observation as he restarts blina.  He has warned that he will be grumpy. I will be getting more info soon about dates but for now it looks like he will be admitted to sick kids around August 1st.  Pan is recovering from his excitement yesterday and is pretty good with a three legged run.  Sometimes he can walk on the leg that had the quills but it still hurts. There are several geese this year but no goslings.  This picture is this day last year when there were nine.

It started out as an uneventful day.  Chores around the house, walks with the dogs.  Marlon likes to go for walks without me but will sometimes take Mina.  I was setting out on a walk with the dogs when Mina started barking at something.  I saw a porcupine and started yelling.  Both dogs were dancing around this creature trying to get a nip at it.  I managed to get Mina away and leashed her to a tree.  I wasn't so lucky getting Pan.  They danced together, going around in circles, the porcupine constantly turning its rear end toward the dog.  I don't know how many times he got hit.  I ran and got Thomas but was able to get a hold of Pan before he got there.  By this time his face was full.  I forcefully pulled him and, once away from it, he realized he was in pain.  He wouldn't walk.  We needed Marlon's help too and the three of us got him in the car.  Once at the vet's, Pan was very calm, but drooling a lot....

Marlon was feeling his legs from all the extra walking he did yesterday.  He didn't do as much today.   We did go watch a piano recital.  His friend, her siblings, and many others were playing.  From first year playing to those that were “ageing” out.  Haven't been to one of those in years but both P and L played piano.  Marlon started learning guitar several years ago but wasn't really interested so not worth it. Pan will stand in the water, either waiting for a stick to be thrown or just hanging out.  I liked the shadow and then noticed you can actually see his feet on the log within the shadow.  The tree has a ball stuck in it.  I have a notoriously bad throw.  Balls, frisbees, and even worse with the ball fingers.  Such bad shots can be amusing but also frustrating.

Marlon is enjoying pushing himself physically.  Walking further and appreciating the stamina even if his legs are tired and sore. I feel a sadness around it that I keep to myself.  We don't know how intense the transplant will be but it sounds like he will feel quite weak for a while.  It is so amazing and wonderful that during cancer treatment, he can feel strong and well.  But I guess I don't trust it. An odd picture.  The ripples in the flowing water with the reflection of trees from above mixed with the rocks below.

After four weeks of being connected to the backpack with blina, Marlon was disconnected today.  All the little things that he is marveling about.  He can go for a walk without carrying the extra weight around, digging into his shoulder.  No more tubing to get tangled up or stepped on or yanked.  He can just get up and walk without having to grab the bag and carry it with him.  To top it off, after the hospital, he went and hung out with a friend for several hours.  He noticed his stamina is improving even if his brain power isn't quite there.  All together it was a great day. We still don't know what is coming next other than dental work but we should find out more next week.  For now we will continue to enjoy the normalcy of every day. Had a quick paddle around in the canoe with dogs and Josephine.  Two dogs swam along side.  Mina was allowed in the canoe as she doesn't like swimming (she didn't make it into the pictures).  Afterwa...

One source of stress while we were in the hospital was Pan, the dog, and his jaunts to the commercial street out the back way.  I was getting messaged regularly and people were upset.  It is dangerous for a dog to be on the road, to be in the yard with fork lifts and on and on.  It doesn't help that he looks like he isn't well fed.  Being half whippet, he looks seriously skinny no matter how much he eats.  People feed him and he scrounges food. While we are home, I am doing what I can to ensure he doesn't wander off.  He did go off today and as soon as I got to him, he showed me he knew he was in the wrong. Marlon doesn't care, he likes Mina more than Pan.  I think they are both great dogs but of course Marlon's health and wellness does matter more than the dogs.  Hopefully they can all live their best lives. Pan is the bigger one with various collars to help him to learn not to wander. 

Glad we didn't have to drive anywhere today.  Just a few walks but a quiet day.  Nice to have hot weather back again.  Marlon isn't likely to be able to swim this summer.  He is disappointed about that. He was also commenting that a lot of the people working at hospital are female.  Most of the oncology doctors and nurses are female. A lot of the other departments too. A neat picture taken by Marlon.

On the way to the hospital this morning, Marlon was commenting that he hasn't had a female anesthesiologist.  He has been put to sleep many, many times and he was wondering if maybe there aren't any.  Today he had a female anesthesiologist.  We did ask and they said that out of the 17 pediatric ones they have (really that many?!) almost half are female.  The tooth extraction went well and he had a good sleep.  This evening he is feeling just fine.  There are more teeth that will need to come out at some point in the future but for now they will be left alone.  They are not decaying or causing any harm.  Two long dental appointments are scheduled to get a lot of work done over the next couple of weeks.  He will be awake for those. Other than that, we don't know much of what is coming.  The bone marrow transplant will happen around the middle of July. Blue Heron waiting for dinner.  A big bird that comes around regularly. 

For dessert yesterday we had ice cream and pie.  Marlon commented that when he gets ice cream, his instinct is to just swallow it.  His pills are always buried in a bit of ice cream so when he gets some his body says swallow.  He had to make a conscious effort to just eat the ice cream.  The day went about as expected.  An hour drive to Hamilton.  On the way there, I had to keep reminding myself not to be rude or unkind to the people working there.  I was stewing.  Sitting in the waiting room for 2 hours.  I was about to cause a fuss when Marlon's name was called.  The first thing the anesthesiologist (the head of them) said to us was that he was sorry we were there.  Not those exact words but we all understood we had no reason to have an in-person pre-op appointment.  He was apologetic.  Marlon rubbed it in pointing out the wasted money in gas could have bought him a sub sandwich.  Lately a lot of financial transacti...

A full day. My niece came by with her two kids and we hung out before heading over to my sister's place where she was having her mother's day dinner.  It was a last minute decision that allowed my niece to come along and see her cousins.  Thirteen people around the table for dinner with 5 dogs milling around.  An unusually social day for us.  Marlon considers himself more antisocial and was definitely ready for some down time.  At least he has more physical energy.  The smallest dog (with a huge personality) picked the biggest dog to play with.  Fun to watch them.  And of course the only living beings I got pictures of today were dogs.  Oops