Lovingheart

What a rash.  Red and bumpy and covering a good portion of his body.  I heard last night they thought it was a strep rash, also known as scarlet fever.  I understand the name, his neck, head, and some other areas were dark red. Fever as well.  Very sore throat.  Not willing to even take a sip of water.  In some ways in more pain and feeling worse than going through transplant. They are now also considering that the rash is in fact GVHD.  They aren't sure so are treating both GVHD and strep. His rash is a little less angry looking but his face is still swollen and he is uncomfortable and in pain.  He will be in the hospital for a few days.

Ho hum, not a great day.  He woke me this morning to say he hardly slept, had a rash, and his mouth was sore and swollen.  After a call to the doctor, it was determined Marlon was to go to emergency.  The rash is not a bad thing but they wanted to see it.  Friday, they swabbed the mouth but the results of that weren't back yet.  So we spent the day at the hospital again.   Because his mouth felt so bad, he wasn't eating or drinking so they decided to admit him. This evening around 530, we arrived back at 8B, the BMT ward.  By this point, they found out the throat is strep, the rash is covering a good portion of his body, and his feet are in serious pain.  After eight, and he is still jumping out of his skin with the feet being the worst.  He hasn't eaten anything, and the cream for the rash made the itchiness more pronounced.  Unfortunately he hasn't slept well for the past few nights, so he has no reserves to deal with the discomfo...

Hospital visit this morning. Vitals, weight, blood work, meet with doctors and nurses.  Marlon has some new sores in his mouth which are not mucositis so they took a swab to see what they might be.   Otherwise his counts are good, still low but that is expected.  They are moving in the right direction Marlon’s brother came for a visit in the evening.  Nice to see my big boy again.  We hung out and then went for a walk to see what we could find for dinner.  So many choices in the area.  So much food that I didn't get it all in the picture. We ate at the RMH as Marlon should be avoiding public places So many e-bikes and mopeds zipping around.  More nerve wracking in the dark.  All the delivery drivers.  I get so nervous and have seen cars turning right and not noticing the two wheelers zooming on the bike lanes.

No medical procedures.  No doctors.  No nurses.  I flushed his PICC line, something that is done daily. I dragged him out in the rain this morning.  He went and sat indoors close to the house.  I bought some magnesium and a couple of other supplements for him. Then later in the day, he came with me for a longer walk.  He can't stay in the RMH by himself.  Even if a friend or his brother were to come visit.  The person would have to be registered with the RMH to stay with him without me on the property.  After supper, he took a shower, and was removing the plastic cover over his PICC line when his phone rang.  He looked out the window and his friend was in the parking lot with her mom and siblings.  A surprise visit.  They had come to town to watch a show and stopped by unannounced.  Luckily it worked out. Marlon had wondered why she was asking so many questions about the room. The gift he received for completing transplant...

He was set free today.  Let out of the hospital on day 22.  Everything seems to be leveling out.  His counts are steady.  His body is getting better at letting go of the fluids. The expectation is still that we will be staying at the RMH for several weeks.  Time will tell how long that will be.  I ask the doctors to not only speak in worst case scenarios but also best case to give a sense of the time range we are looking at.  No real answers yet.  They don't want unrealistic expectations. The nurses shook their pom-poms, and gave Marlon a parting gift as he left.

We thought for sure Marlon would be discharged today.  I carried stuff to RMH and was about to bring over a second load when the nurse came in with an apologetic look on her face.   One more day of observation.  They are constantly monitoring input versus output.  How much he drinks and how much he pees.  They also check his weight.  He has been getting medication to pee and after one day without it his levels were out of whack.  Because of the VOD, which has healed nicely, they are being cautious. To be fair, Marlon doesn't really care one way or another where he is at this time.  This picture ties in nicely with yesterday’s.  This is another area where there are a lot of pigeons hanging around and people are obviously ignoring the sign.  I also understand that many birds can have a harder time flying the distances they need to if they eat too much human food.

One more day.  He is still in the hospital.  Waiting on a quick treatment that was supposed to happen today but was delayed. His blood counts are starting pretty steady.  The platelets did jump up to 66.  Still low but much better.  Neutrophils at 0.45. One thing they are watching for is Graft versus Host disease (GVHD).  It can show up as a rash, a fever, a change in stools.  While Marlon has a rash on his face it isn't the ”right” kind.  Some GVHD is good as it can signify Graft versus leukemia - more fighting power. As I was walking past a building, this woman was walking out.  She was shuffling along with her cane but her walking was made much more unsteady with the pigeons that were encircling her.  The birds were so excited and jostling for attention.  There are signs around in some places warning against feeding the pigeons but there is something enticing about communing with wild animals.

His neutrophils were down to 0.43 today.  They said they need to be at 0.5 or higher for at least three days to be discharged.  All of his other counts are good so I guess we'll see what they decide in the morning.  At least he has more time being disconnected.  He went for two little walks.  And over night he won't be hooked up.  No beeping brain in the night He has a bit of a rash on his face around his nose but it's not of concern. The IV pole is down to only one brain with the pumps.  Four pumps but most of them aren't used.

He has been getting TPN (total parenteral nutrition) which is liquid nutrition that goes in through the IV and bypasses his stomach.  It helps get something in while he can't eat.  Last night, it was running for 12 hours, scheduled to stop at 7am this morning.  Seven is switchover time for the nurses’ shifts.  Not a good time to end an IV.  Our sleep is so often interrupted by the beeping of the IV machine (the brain). This morning the beeping started at seven to signify that the infusion was complete and I kept hitting the silence button every minute until someone finally came at 730 to properly close it out.  We are both looking forward to getting away from the constant beeping. He was actually disconnected in the afternoon and we went outside and walked around the hospital.  His legs are still pretty sore and his feet really hurt to be walking on them.  He is motivated to heal and it won't be long before he is in shape.  Remembering last y...

More talk about getting out.  His neutrophils made it up to 0.58. He was able to be detached today and we went down for instruction about his PICC line.  What to do if it breaks, comes out.  Those are less likely to happen but it will need a daily flush.  Using a syringe with salt water to make sure the lines keep open and then a heparin lock to ensure no clotting or blockages.  Even though we'll be blocks away from the hospital we won't have to go in too often.  An odd picture, perhaps not easy to understand.  Taken from eight floors up, down to the atrium.  A big open space that has me shaking my head in confusion.  It seems that hospitals are always expanding, there is never enough room.  In downtown Toronto there is never enough room.  To have two huge atriums (it is open on the other side as well) that are nine stories high seems like such a waste of space.

His counts continue to rise.  They expect his neutrophils to be at least 0.5 for 3 days in a row before discharge.  Today they were at 0.48.  His platelets are up to 50, hemoglobin 101, and white blood cells 1.37. He will likely be discharged on Monday.  The doctors say he can go home but they don't mean it.  He can go to the RMH.  Some say he will have to stay there until day 100.  But they speak in worst case scenarios and Marlon normally recovers closer to best case scenarios.  So we'll see.  We were originally told he'd be in the hospital until day 45, maybe day 30 if all goes well.  It looks like he'll be out closer to day 20. I walked down to the water today.  I hope that Marlon will be up for a walk there sometime in a month or so.  His legs are sore at this time.  They said that is not totally uncommon as the marrow starts to rebuild.  Not much energy.  He did eat a few more bites of food today than yeste...

Decent counts this morning.  No transfusions required.  Everything is going in the right direction including his liver which is getting stronger.  Because he didn't need any extra blood products today and because his weight is not going up (which signifies liquid retention), he was able to drink 600ml today.  Still not a lot compared to what he is used to but he enjoyed every sip of water.  He tried to eat some noodles but was only able to eat a couple of bites. A while ago I was complaining about this low grade beeping that was apparent with a certain medication.  It took me a while but I finally figured out that when the brain is plugged in then the pump doesn't beep.  As I was excitedly explaining my discovery to a nurse, she knew the solution as well.  Now I am making sure the nurses that come into this room know that.  Not everyone gets as rattled by noises but there have to be others that notice it. The ”brain” is the one in the middle ...

The first day in over a week that he didn't need platelets with a count of 33.  He did need blood but if things continue in the upward trend, he may not need any more blood products.  Hopeful. He had a slice of turkey today, first thing he has eaten in quite a while.  He is contemplating eating more tomorrow. This is a pic from the window side of the room.  To the right is a washroom with a shower.  To the left is the corner of the cushion I sleep on.  The ward is under renovation and Marlon is lucky to be in one of the newer rooms.  Other than going down for the MRI, he hasn't left the room since August 1st.

On. Saturday I noticed the NRBC (nucleated red blood cells) counts had changed drastically.  They went from zero to 9.  When I remembered to ask the nurses about the number, they weren't sure, and I missed the doctors’ visits (or forgot to ask).  Looking at the meaning of NRBC online I understood it was young blood cells that had yet to mature.  I thought it had to be a good sign.  By Sunday that number was 25.  Today it was down to 12.5 but the doctor confirmed that it was the body back at work making blood cells.   It's working. His WBC was 0.72 and his body is also showing signs of rebuilding immunity with a neutrophil count of 0.17.  Still neutropenic but looking up  It really is very exciting to see the counts improving daily and to hope that the worst is behind us. His platelets were at 6 so he did get an infusion. After his shower today he was not completely drained as he has been. Day 13. I stopped to admire the tree and take a couple...

When I was a teenager, my best friend had us going a couple of times a year to give blood.  It wasn't really something I thought about much but luckily she was a good influence and we did as she said.  The last time I gave blood, I fainted afterwards. When we saw how many blood products Marlon was getting the first time he had cancer, his brother and sister decided to give blood.  At first they felt fine but then they both fainted.  That may have scared them off from giving blood again. But when I see again just how many blood products Marlon and other cancer patients get, my gratitude for those that are brave and healthy enough is real.  He did get more platelets today as his counts were at 2.  His WBC is up to 0.38 and his hemoglobin was down to 69 so he is also getting blood.  The night nurse was frustrated that they decided to do that in the evening.  Not being able to drink much is very frustrating for him.  300 ml a day doesn't go very ...

They did decide yesterday that he is in the early stages of VOD (veno-occlusive disease).  This is temporary.  The liver is stressed from the radiation and everything else.  The big thing it means to Marlon now is that his liquid content is restricted.  Normally in the hospital they are all about drinking.  More, more, more. Now he is limited to 300ml a day on top of what he is getting through the IV. His platelets were at 3 this morning.  He is getting platelets daily, and it is good that he is above 1, but soon will start to make its own again.  His white blood cells are at 0.22 up from 0.06 yesterday.  It seems that when they climb they jump up. No neutrophils. His hemoglobin is falling a bit, down to 78.  His counts are going as expected.  They may lower again or continue to climb.  He isn't feeling well.  No more smoothies.  Not interested in ingesting anything except water and that is limited. The view from the windo...

Not a good night sleep wise last night.  He was also sick just before bed. It was exciting this morning to see his counts though.  His white blood cells have been hovering around 0.01-0.02 and this morning they were at 0.06. His platelets were at 4.  That is still ridiculously low but better than 1.  They figure that if all continues on this path, he'll be released to RMH in a week or week and a half.  Regardless of all the good stuff, he actually had a bad day.  Couldn't even drink a smoothie.  Only part of one and that is it.  Nausea, headache, and just a trip to the washroom wipes him out (the washroom is 5 steps from his bed). Over 12 years ago, L was trying on dresses for skating so M had to join in.

Counts are still low and his platelets have the doctors confused.  They continue to try different things to see if anything makes a difference.  Marlon’s nose is still bloody.  Again not out of the ordinary with low platelets.  He is getting close to the time where his counts will start to recover.  Today is day 9 and change becomes apparent anywhere from day 11 onward. A common site on the streets of Toronto are e-bikes, scooters, and mopeds.  Very common on the back of those are box size cooler bags.  Pedestrians need to be careful at intersections.  The food delivery services have many of these vehicles dashing this way and that.  There is a block close to the hospital where a bunch of people hang out with their vehicles ready for the next call. With the bikes, they just stop on the sidewalk when running into stores for pick up.   Nice that they also have bike rentals that are well used. Haskap berries.  Not in season now bu...

Not much change here.  Still trying to stay on top of the disappearing platelets.  They are now treating him for an antibody he may have that is fighting off the platelets. His nose is not outright bleeding but a constant slow trickle.  He can't blow his nose as that aggravates the bleeding.  They want clotting.  Clots are uncomfortable and he can't breathe through his nose.  For now he is sniffling. While wandering, I always see dogs, big and small, on walks with their owners.  And it is kind of sad that many of these dogs don't know what it's like to go for a good run or a long walk on grassy terrain.  There is so little grass in the city.  But most of these dogs are loved and they return that love.  They have their purpose.  I am always grateful that I live somewhere where the dogs can run and there are so many spaces without concrete. There are still some flowers.

It was even later when he was given the drug to make him pee and after 2am by the time he finally fell asleep.  That was around the time he had platelets.  They also gave him some later in the day as his count was down to 1 at the 4pm check. One side effect from transplant can be Venous Occlusive Disease (VOD).  Though Marlon didn't really seem to present with most of the symptoms, one can be inability for the platelets to “stick”.  They gave him an ultrasound this morning to check his liver and all is well.   When Marlon heard the words for VOD, he said Introverted Pizza Disease.  That one had me stumped.  He said he saw a video about how long it would take to cook a pizza on Venus and occluded made him think introverted. He plays word games.  Yesterday’s nurse was called Nina.  He responds with balloon.  That is his nickname for her (99 Luftballons). His evening nurse was Angela and his nickname for her was Niko (DiAngelo from Per...

He was pretty upset when he was told at bedtime (10:30) that he was going to get the drug to make him pee.  That definitely affects sleep.  They carefully chart input vs output and BMT patients can easily become bloated.  His blood pressure has also been running a bit high.  Luckily, he had a half decent night’s sleep in spite of the peeing.  Never without interruptions and noise.  He's been having more nose bleeds and that is a sign of low platelets.  On the 8th, his platelets were at 34 which is still very low but not low enough that they infuse.  The 9th they were 20, and yesterday when they went down to 10, he was given platelets.  This morning (they draw blood every morning at 4am) his platelets were at 3 so he received another infusion.  He got another bag in the afternoon as even after the first dose he was only at 2.  He will be getting more platelets at 2am and they'll check his counts again at 4.  The normal range is ...

Another night with not enough sleep for Marlon.  He didn't fall asleep until after 4.  He threw up last night.  The first real one in almost three years.  At the beginning of cancer treatment this time around he had a couple of moments where he thought for sure he'd be sick but nothing major.   During the day all he'd had was a smoothie and that came up last night.  His blood pressure has been high on and off and it was high in the night.  Headaches, nausea, pain, discomfort,... He did finally fall asleep and dozed until almost noon.  He also had a nap late afternoon before he went down for an MRI.  He has been having regular headaches and that is one side effect they don't normally see from the transplant.  It was his first time leaving the room in over a week.  He was surprised he was allowed out. He did get an infusion of platelets this morning.  He had a little nose bleed this evening. This picture came up as a memory....

The beeping last night wasn't too bad for me but unfortunately Marlon did not sleep well.  It wasn't that the pain was too bad or that he wasn't tired.  He just didn't have a restful night.  So he had a good nap in the late morning.   His mouth is quite sore so he isn't eating anything.  He still can get down some smoothies.  They started him on TPN (liquid nutrition) today.  One more thing dripping via the pump. And he has a microphone cable that has silver plated copper in it.  This is part of a pump in which he chooses the level of pain killers delivered into his system.  There is of course a maximum and he can't get a continuous dose but he gets a certain amount of control. A mess of tubing

Night before last, Marlon had the shakes.  Part of the fever and chills but it also felt like shock.  And I imagine it is a shock to the system to have another person entering into your being.  We are lucky they found a good match but it is still a challenge.  He still gets medications throughout the night.  If not meds then at least fluids.  The constant noise and gurgling of the pumps.  There is a particular one that often beeps and it runs for over an hour.  From 5 this morning until after 630 I felt like I was losing my mind.  It's like trying to sleep with the alarm clock going off.  Maybe not right by your head but in another room.  For tonight I have ear plugs. Marlon is more consistently in pain and not eating much.  A smoothie and maybe a protein drink.  The pain is expected and will continue for a week or so.  All things considered he is maintaining a decent attitude. I took a video of the pump to get proof ...

An uneventful day.  Overall Marlon is doing well but he is far from feeling well. Another night with little sleep.  Another mild fever and the usual discomfort.  Today is the start of the mouth sores (mucositis).  This is something we have been informed is pretty much inevitable and incredibly painful.  More intense pain killers will be used and even with those, eating is very hard. And next to no energy.  He has been awake most of the day but not doing much. As the full moon nears, I go back to a picture of the full moon shining over the lake at my sister's cottage.  Peace

Not a restful night.  He felt pretty bad.  His legs and head are especially sore.  He did develop a fever in the night but it didn't last too long.  Today he hasn't been awake for long.  Lots of wake ups and no real deep sleeps but lots of resting. He is exhausted. No extreme reactions to the cells so that is good. In speaking with the doctor, I understood more about stem cell transplants.  There are many different kinds.  They can choose the stem cells from the donor that target the blood, the muscles, the nerves,... He was saying that a bone marrow transplant used to be the marrow would be extracted from the donor's back.  Now the donor is awake while the blood is drawn.  For 3-4 hours the machine at the other end takes what it needs and sends the rest back to the donor.  In Marlon's case, the stem cells that target the blood were needed. This store is around the corner from the RMH.  The street has changed over the years, I belie...

Transplant finally started at 5:45 pm.  I felt like I was sitting on pins and needles before that.  Going out for a walk helped.  Although he didn't admit it, Marlon was worked up.  Understandably. It was a simple process of getting the cells.  Just like any normal blood transfusion except what was put in was less red blood cells.  It was lighter in colour and not as thick.  Less than an hour and a half later the cells are in. And now several hours later his body is reacting.  His legs and his head are hurting.  He is very uncomfortable.  The next few days are the hard part as his body reacts to the invasion. That little bag can change so much…

It is a waiting game.  I am anxious and nervous while I wait.  Though he said he's feeling ok and not nervous, Marlon admits to “waiting”.  There is a build up.  An anticipation. Originally they thought the transfer may happen midday.  The time is scheduled for 4pm. They are fresh cells from the mysterious donor, likely harvested yesterday from somewhere… could be anywhere in the world.  And we wait and wonder.  Will it be a smooth process.  We heard that Marlon has a strong immune system and right now they don't want his immune system to be strong.  They don't want his body fighting the invading cells. Weird tan lines on the head that is waiting...

He beat the odds and did not fever at any time during the ATG.  I have often said he does not fever easily.  He had his last dose today.  I don't think it affected him as strongly.  He does get frustrated being attached to the monitors though. He was able to eat a bit more than he has been lately. I don't know how many times we heard that tomorrow is the big day.  Today is day -1.  Not a lot of room to move around here but he does have this portable cycling contraption.  He sits in the chair and pedals.