Lovingheart

The other day, I had a pre-op appointment for the dental surgery.  A phone call with pharmacy and then one with the nurse.  Then she decided we had to come in for an in person pre-op appointment.  That was scheduled for Monday morning.  I figure it is a waste of time because our presence the day before will not make a difference to what happens the day of the surgery.  I tried to cancel but then was told if we didn't come in for the pre-op, he couldn't have surgery. So frustrating.  As Marlon put it, we'll be put in a room, they'll leave us there while they figure out what they need to and then we'll be free to go.  Grrr.  A waste of gas, of time, and waking up earlier to get there on time.  Oh well.  In the grand scheme of things it really is minor.

No more beeping at night.  Smooth visit at the hospital today.  A quick in and out.  Change the dressing on the PICC line and change the blina bag.  Preparation for next Tuesday's appointment for “surgery”.  The one tooth that will be extracted.  Pretty straight forward except the blina.  That will need to be disconnected for the sedation but they need to make sure it isn't turned off for too long.  Nurse just told me today that if it is restarted after 4 hours, he would need to be admitted for observation again.  Very unlikely that would happen. Marlon has little aches here and there, one of those is an achy heel.  Overall, he is thrilled to have energy and strength for walks and I think he is taking some steps towards regaining his arm strength.

Night before last, I woke up to a beeping sound and figured it was Marlon's blina pump. I went and fiddled with the tubing, he moved his arm and it stopped.  When that happened P was trying to stop the beeping by turning off his alarm clock. Last night, I went three times to fiddle with the tubing and straighten his arm.  When he bends his arm, the flow is impeded and it beeps.  Even after it stopped, I still thought I heard the pump beeping away.  Happened a couple of times this morning as well.  Tonight we will see if we can change how the tubing sits and hope it works ok. The day was uneventful.  We appreciate the calm days.  Another picture Marlon took

Definitely a week of changes.  Received a call today to change Marlon’s opthalmology appointment.  Not even sure why he is going to one now.  His eyes are fine.  Before diagnosis he couldn't see well at all.  Most things were blurry.  I think they decided that was because the inflammation was pressing on nerves.  It didn't take too long for his sight to go back to normal.  Either way we shall enjoy the extra day tomorrow.  Today he had a friend come over and they played games and took a walk in the rain.  He can act like his life is normal.  Glad I was able to get a walk in before the rain this morning.  I did walk in the pouring rain as well.

We were getting ready to head to the hospital when I received a call from the dental office asking if we could come today instead of tomorrow.  I emailed the nurse at hospital and told her we'd be late.  Get those two things done in one trip.   I feel overwhelmed by the state of his teeth.  When I hear the dentist rhyming off all that needs to be done, I am very grateful I am not the one doing the work.  Even though he would like to be sedated and get all the the fillings repaired in one shot, that is not an option as the wait time for that is 6 months.  And instead of having 3 teeth extracted next week, that is down to one but he will have more extractions once all the cancer stuff is done. Quick in and out at the hospital to get the blina bag changed and we were on our way.  I continue to be amazed by how much food he is eating.  A short time after finishing one meal, he is already looking for the next.  He has to make up for lost time...

On this day I think of my parents as they married in 1952 in England where they met after the war.  My father was from Germany and my mother from Austria.   A couple of months ago, we were talking about where we came from and the history, partially because Marlon was curious to do DNA ancestry testing.  This was when he was well and healthy and partially he was curious to see if the cancer would show up in his DNA.  Now that I'm writing this I wonder if and how DNA changes with the bone marrow transplant.  Found out today we have a dental appointment on Wednesday.  They contacted P thinking he was the primary caregiver.  That caused a bit of confusion but we got it all sorted out.  A slightly coloured nighttime picture.  Majestic bird

My sister in Montreal sent an email mentioning schnitzel.  This is something Marlon has been craving lately.  I got to thinking that maybe we could go to Montreal for a couple of days.  I know that his blood counts are pretty good and we could possibly get away for a couple of days.   When I asked Marlon if he'd be up for that, he said for the good schnitzel from there, yes he'd like to go.  He'd also like to go to Vienna and eat schnitzel there too.  Vienna will have to wait. In the end, I'm not sure it will work with all the appointments coming up but it was nice to imagine a mini getaway. This is a picture made long ago  for me from Marlon.  One of the things that has been on the fridge for years.  One of the drawings from my kids that have sentimental value. 

Finally took most of the magnets and letters off the fridge.  For many years, we have had ‘the fridge’ spelled out on it.  All gone.  Nice to see the white again. Marlon went out for a walk and stated afterwards that it was a real walk.  Not the slow movements of late but moving along at a solid pace. Especially in the last week before the diagnosis, Marlon’s health and strength went downhill quite drastically (and I  was thinking that the mono was super intense).  The Friday before, he had to walk home from school (I had been driving him when possible since he had no energy) and it was a struggle.  Since treatment, he has had strength and stamina difficulties.  This health rebound is what the doctors expected.  The body bounces back with the immunotherapy.  Strengthening before he is taken down again.  Marlon timed the squeak of the pump and we were both surprised to see it was every 35 seconds. Tired doggy, dreaming of food

A quick hospital visit.  Change the dressing on his pic line (changed every week) and get a new blina bag put in his pump backpack.  One of the things about having the immunotherapy constantly hooked up is the noise of the pump.  Every five minutes or so it is the squeak of the pump.  Not loud, but a regular noise.  And ever so often it will beep.  Not properly plugged in.  The line is kinked or not flowing properly.  He is half way through his time with this backpack. Then we had an appointment with the oral surgeon.  Beginning of June, Marlon has an appointment to have three teeth removed.  Then all the cavities will need to be fixed up as well.  He does take good care of his teeth but they are not good.  Lots of decay. I haven't seen any full size butterflies yet this year but I'm sure it will warm up soon enough. This pic is two years ago

It is nice to have these quiet days.  Things will be picking up soon.  We had three appointments scheduled for tomorrow and the timing wasn't going to work out so I switched Marlon's opthalmology appointment again.  It has already been changed once but I feel the dentist is more important and the blina bag change is not optional.  Last night, I was preparing for sleep when Marlon said he hadn't fallen asleep yet because of tooth pain.  The eyes are a follow up because of the vision issues he had when re-diagnosed.  His eyesight is back to normal again.  I am still shaken up after the phone discussions with the doctor about the transplant.  I have had the naive view that Marlon will get the bone marrow transplant and life will go back to normal again.  But they mentioned radiation beforehand and the thought that his blood type will change has me on edge.  Two years ago P rented this tractor for some work around the yard.  As a little...

Though it was a home day, there were many things happening.  Appointment made for consultation for dental work.  Getting information to be put on the waitlist for McDonald house near Sick Kids.  Apparently the wait list is long and we may not be able to get a spot.  And the big news is the results of the initial DNA tests.  Both P and L are 50% matches.  The Doctor at sick kids had to speak with both of them first before being able to tell me.  First one I heard about was Linsy, and I was surprised by how emotional I felt.  In the global database, there is also a 100% match. They will see if the 100% match person is available to help.  If not, it will likely go to P or L.  I asked how one would make a decision between the two and the doctor said more in depth tests will be done. I was shocked to hear that the recipient of the bone marrow will take on the blood type of the donor (or “Champion” as they call them) within approximately 6 mon...

Another hospital day to get the blina bag changed.  Because his blood counts are good, they are hoping to get the dental work done soon.  Not sure where that will happen.  It has been two weeks since P and L were tested to see if they are bone marrow matches.  Hoping to hear some answers soon, maybe by the end of the week.  Such a different treatment this time around.  Hopefully Marlon will start to feel better soon.  Today was the first day in a week that he wasn't feeling a consistent headache.  He feels like parts of his body are bruised.  His upper arms, his legs.  I guess those are the aches that come with the change in dosage of the blina. Marlon’s hair a year ago.  I can definitely see how he has changed and matured in his appearance in a year.

Moping.  That's how he seemed today.  Not feeling great and not making any pretenses about feeling bad.  Headache, nauseous, body aches, and then a toothache to top the day off.  A lot of these symptoms are expected.  The blina can cause flu-like symptoms.  The change in the chemo drug affects the nausea and overall bad feeling.  And the tooth, well, his teeth are in bad shape. He had eggs on toast for breakfast and then was still hungry so he ate Paco's eggs as well (I made P more when he was ready to eat) and he ate well the rest of the day but even the food wasn't giving him much enjoyment.  Everything is just “meh”.   For a while he was sitting outside without his hat on and has a slight burn on top of his head.  Extra sensitive to sun and his hair has always kept his head protected.  Two different white flowers covering the fields along with the many dandelions.  The bottom flowers are wild strawberries.

They sent Marlon packing again.  Yay!!  Well actually I did the packing and carted our stuff down to the car.  The transition to a stronger dose has been relatively smooth so far. Good to be home again.  Though it was only noon, Marlon was pretty tired and took a nap when we got back.  His body probably needed extra time to digest all he had already eaten.  His appetite seems endless.  Still lots of chicken.  The greeting from the dogs is nice and they are happy to have us back again. Later in the afternoon Marlon went outside.  I was starting to worry as he had been outside for at least an hour.  When I messaged him he sent me this picture.  We are so lucky to live near woods and fields!  Healing space and fresh air.

Everything is going well for this hospital visit.  Won't be a long one. When Marlon had the bad diarrhea they thought it was c diff but for him it wasn't.  A few others on the ward do have C diff.  It is considered an outbreak because it is such a contagious sickness.  What that means is anyone from the ward is in isolation.  No using the group rooms, or kitchenettes.  Limiting visitors. I felt like an Uber walker today.  Doctor came by when I was at the grocery store buying chicken.  Then I bought him a sub.  And another trip to the grocery store for more chicken.  I did also manage to go out for a walk for myself and it was during that time they decided to send Marlon for x-rays.  More dental ones.  I can hang out and be close by but it seems to be those times I slip out when a doctor comes by or an appointment is made. The higher dose of blina is treating him well and they started him again on the super expensive chemo drug ...

Before bed last night, Marlon's temperature was 36.9 so I expected a calm night.  He woke me up at 430 with a bad headache and a temperature of 37.9.  He took a painkiller and managed to fall back to sleep.  His temp was normal by 9an when he woke up.  What a yo-yo. Either way to the hospital to be admitted.  The amount of Blinatumomab (immunotherapy) is being increased and he will be observed to make sure he tolerates the change.  And again I forgot he needs extra caffeine with the LP.  He had some on Tuesday after the procedure but he needs more to overcome the headaches.  He had a drink with caffeine and that helped. A lot of ups and downs.  Long weekend and it looks like most of it will be spent in the hospital. The dandelions damp with the morning dew look so different. 

Not the best of days.  He had a headache and didn't feel right.  I was watching him carefully all day,  taking his temperature way too often.  He is normally pretty steady at 36.9.  A few times today, his temperature went up to 37.7.  They don't consider fever until 38.3 at which point we would be expected to head back to hospital.  He is still neutropenic, not much immune system to support him.  He took it easy and spent time in his chair and in bed.  Before dinner, he did have enough energy to go for a little walk in the woods.  He is enjoying food just fine and has a good appetite.   Heading back to hospital in the morning where he spends the weekend to be observed as the medication is increased. One year ago today, Linsy, Marlon, and I went sky diving (no the dogs did not). A little video from it: https://youtube.com/shorts/qsqdiOeXCFI?feature=shared Maybe with luck and health, we can go again next year.

A pretty full day compared to the last month.  Stuff around the house in the morning with him not being completely sedentary. We left in the afternoon to buy pet food and then to the grocery store for chicken and more.  He kept commenting on the high price of different foods.  I think that is partially because I had shown him my credit card statement and how most of it was food.  Marlon had made arrangements to meet up with a friend after school so we picked him up and he came back to our place.  They walked a bit and hung out for a few hours. By evening, Marlon is done.  Sore all over and exhausted in so many ways.  A good visit with his friend and a good day overall but a lot.  Hopefully a good night's sleep will help. The sky is dark with clouds, the sun is setting but a few rays break through to brighten the apple tree in full bloom .

Back to the hospital today for Marlon's last LP.  He enjoys the sedation.  The feeling washing over him and then he is asleep.  He appreciates the sleep and the slow return to reality.  Today, he felt like he woke up too soon and wasn't drifting in the lala land. The Doctor wants dental work done before the bone marrow so he'll have another sedation for that. The bag of immunotherapy in the backpack was changed as well.  Twice a week. We are hoping the rest of the treatment goes as well.  He likes to say that in less than four weeks with the help of the chemo he has beaten back the cancer.  I know it was similar last time that the cancer disappeared so fast so it seemed unfair to continue to blast the body.  But apparently it needed that blasting because some cancer cells did not die and fell into a drug induced sleep for several years.  I really didn't believe it would ever come back.  It is nice to see how he is recovering now.  S...

We made it home!  Four weeks ago today, we went to the hospital to see what was happening with Marlon.  Not the answer we expected and a much longer stay than we anticipated.  We are both happy to be away from the noise, bright lights,  constant hum of loud fans, and the cries of little ones suffering (humbling and sad to see and hear). Marlon has his trusty drug-filled backpack with him and is happy to be home.  He can work on being healthier and a bit more active when not in the hospital environment.  And he really does seem better.  The bloating is gone and he lost 5kg in a couple of days.  No more diarrhea.  His throat still hurts but it is more manageable.  The initial reaction to the blina (immunotherapy) has calmed down.  His blood counts are improving though his neutrophils are still quite low. Marlon just said one of the best things of being home is breathing fresh air.

While both Marlon and I understood he was being released today, apparently the doctor did not say that.  There was no real reason to keep him in except she wanted to continue to monitor the blina in his system.  Also his throat is still hurting so he hasn't been drinking enough.  While in hospital, he is hooked up to the IV and regularly has liquids dripping in. He did get disconnected from the IV to prove that he can drink enough.  This afternoon we walked to the grocery store.  It is a good distance for someone who hasn't walked much in over a month.  And he ate lots of chicken.  One thing that goes down well.  I can't get used to that because his food desires will change soon.   This backpack is attached to him for the next month.  The blina and pump are in the pack and connected to his pic line.  At this time, he will have to wait until Tuesday when they switch out the bag, to change his t-shirt!  Then we will have to ...

Another quiet Saturday.  Marlon didn't have the energy to do much and felt pretty bad.  The blina made itself known in his body.  Feeling sick and nauseous and uncomfortable.  His stools still aren't back to normal but so much better.  Looks like he is finally getting out of the hospital tomorrow, Sunday.  One day short of four weeks.  His longest stay yet. He will be admitted again on Friday to bump up the dose of the blina and try again the chemo drug (the expensive one) that they stopped when the diarrhea took control. I did find the time for a good walk today.  Also two trips to the grocery store to get food for Marlon.  Feeling so bad, he wasn't able to eat much but did enjoy chicken.

He was only up once in the night for a poo.  Much better.  And he was able to eat a bit during the day.  He was given some blood, took a shower, and then started the preparation for the immunotherapy (Blinatumomab).  He was checked over in different ways.  His hands tremble and some reflexes are a bit off to start with so they are watching closely for neuropathy.  One of the many possible side effects is mental confusion.  They did some strength testing, hand writing, and asked various questions.   So far so good. L came in the afternoon and gave him a buzz cut.  He had started to lose a lot of hair so it was time to clear his head. His brother came after work. The four of us had dinner together and played cards.  A late night and Marlon was happy and tired when he climbed into bed.  An enjoyable evening.  Add to that it seems the diarrhea is done.  Here's hoping. A goofy look.  He had a lot of hair.

A rough night as expected.  A lot of time spent on the commode.  He had his rolling dinner table with a pillow on it so he could rest his head.  He slept most of the day, just getting up ever so often for more diarrhea.  By the afternoon he was lasting several hours without.  He still hasn't eaten anything, just a couple of smoothies. They ruled out C diff and other viruses.  The doctor is guessing it is just an extreme reaction to the drug he started the other day so they have stopped it.  He will go back to the original chemo drug he was taking the last round of cancer.  They gave him immunoglobulin in preparation for the immunotherapy tomorrow.  A lot of potential side effects. Considering how his diarrhea flushed his body, his blood and electrolyte numbers aren't bad.  In fact, hemoglobin, platelets, and neutrophils are all rising.  This bracelet was given to Marlon by his friend's mom.  Morse code to spell f*** cancer and ...

Marlon had been cleared for a leave of absence (LOA) today.  When he woke up, he felt so bad that we decided maybe it wasn't a good idea.  Then he started to feel better and thought if he took plenty of anti nausea medications and pain relief he'd be ok. We waited for medication through the IV, medication to bring home, and Marlon to be disconnected.  It took quite a while to get the medication and by this time, Marlon had diarrhea.  Then again, and again.  He realized there was no way he could be away from a washroom too long so no car ride. He was told he was changing rooms.  Back to a private one in case he was contagious. There was another boy and his family sharing the room we had been in.  There are 16 beds on the ward and we have seen it with just 3 beds being used (a couple of weekends ago) and now almost full up. L came for a visit since we couldn't make it home.  Nice to see her but Marlon spent most of the visit on the commode.  No...

LP this morning.  Actually it was noon by the time it happened.  Marlon was hungry.  He used the waiting time to write a list of foods he wants and then he rated them.  Ease to acquire the food.  Taste of the food.  Things like soup, sushi, poutine, KD, hot dog,... When he woke up and felt ready to eat, I had soup, sushi, and a salad waiting for him.  He gobbled the sushi and soup and then floated along in a blissed out state.  Sated and still high on drugs.  He decided he was going to have poutine for supper.  By 5, he was already starting to feel off.  We went for a walk outside after 7, and bought his food.  He wasn't able to eat much of it.  I wasn't surprised but disappointed to have paid almost $20.  Even with different anti nausea medications, he isn't sure he'll make it through the night without throwing up. He got the new medication today.  Normally, the nurses give him what he needs, when he needs it....

The blood sugar sensor kept going off in the night.  Low blood sugar.  I heard it beeping, thought to ignore it but worried, and then asked the nurses if I really needed to wake Marlon up to drink some juice.  Yes.  At one point the monitor showed the blood sugar at 3.4.  Even after the juice, the monitor was still beeping signifying low sugars. Then around 6 this morning it continued beeping showing it was time to replace the sensor.  When we did finger poke to check blood sugar the levels were low but not that bad.  Frustrating to get so little sleep for nothing.  Now that his blood sugars are actually levelling out, he no longer needs the sensor and just checks himself before meals. Other than that it was an uneventful day.  Tomorrow he will replace a chemo pill he has been taking for another one.  A step up.  This is one that targets the Philadelphia positive part of the ALL.  During the whole treatment last time around he ...

His throat was still very sore today.  And he was bloated.  So puffy.  His weight bottomed out at 54 last week and then once they got the blood sugars sorted out it has been steadily increasing with today at 62 kg.  Now that he is no longer on steroids, his blood sugar is bottoming out.  Several alerts today indicated that his blood sugar was too low, at bedtime as low as 3.6.  It isn't supposed to drop below 4. They have some answers for the bloating too.  His albumin levels are low.  Albumin is a protein in the blood that helps to regulate fluids.  Another side effect from steroids!  While we can appreciate how fast the drugs they pumped into the body worked to push back the cancer, it is the side effects that are so harmful. He received a transfusion of albumin and then something to make him pee.  Hoping that both the blood sugars and fluids find balance again.  A couple of visitors today.  First was his oldest friend....

Marlon has been watching me and noticing how I am.  He feels I am stressed out.  He tells me I need counseling.  And other things.  Living in close quarters, he has greater maturity, and he observes. His throat is quite sore.  That makes it hard to eat and drink.  Anything he eats doesn't taste right.  A bad aftertaste from most foods.  He was saying that eating and enjoyment of food are what is keeping him from getting very depressed.  So he was pretty down.  Wants food but nothing satisfies. And another room change.  This time we were bumped to a semi private room.  The second half is currently empty.  The private room was for another patient coming in that needed to be isolated because of infection.  It seems that every day there is change on the ward.  A few of the rooms have longer term patients, sometimes it can be for several months.  Perspective. So cheeky, my neighbour's dog.  Such a good dog, ...