Lovingheart

Marlon has been in the hospital for two and a half weeks.  At one point, I suggested to him that maybe I could go home to say hi and pick up a couple of things.  He was adamant that I not leave so we have both been here for the whole time. His neutrophils were up to 0.5 this morning. A very good sign.  His platelets down to 5 so even though he had some yesterday, he had more today.  Now it is the platelets that are keeping him in the hospital.  They want to see him going several days without needing a transfusion. He had physio and then Nora came to play a couple of games with him. His MRI was scheduled for 515 so I went out for my walk with the intention of being back by 5.  I left a little later than I had hoped but still I planned to drive to a parking lot part way along the trail.  The past couple of times I only got so far before having to turn around and head back.  It was cold and windy but I enjoyed the walk until my phone rang.  At t...

  One of the highlights of this week comes from home and that is Paco finishing his second year of university.  He worked hard and adapted well to the online thing.  Now he will work hard to make money and do one summer course.  Busy! Marlon woke up twice in the night. He received platelets as his counts were down to 5 from the 25 they were yesterday.  He is getting more pills as opposed to IV drugs and is not thrilled.  Now that his health, outside of his blood counts, has stabilized, his vitals are only being checked twice a day.  It used to be every 4 hours.  And every morning at 6 am, they take blood to check his counts.  A week ago it was twice a day. The camp counselors came for a visit and we played Uno.  Marlon had one physio visit but he was quite tired afterwards. I was happy to remember I have my spring jacket here so I walked in the drizzle/rain today. This evening we watched the movie 'SuperSize Me'. Not the best of pictures...

Ya just can't make some people happy! Marlon sleeps through the night, not getting up to pee, and still, I wake up several times, waiting for him to wake me up.  I'm glad he slept well and still can't believe he made it 10 hours without a pee.  And, he made it through the night without oxygen. Still fewer drugs via his port but he will be taking more pills.  A step in the right direction. Before he is discharged, they want his neutrophils to be steady at 0.5.  This morning they were 0.3.  His platelets should stay above 20 (preferably 30) though the drug he is getting for the lung infection does lower the counts.  This morning, the nurse practitioner made it sound like it could easily be another week and a half but we are hoping for less.  All a matter of the healing he is doing. There are six patients on the ward now but he still had two visits with physio.  He played minecraft with friends and with his brother.  And did some more origami....

A better sleep last night as Marlon only woke up twice.  He sweats so much but happily no fevers. His platelets dropped to 10 so he had to get a transfusion but the medication he is getting continues to decrease.  His hemoglobin had been just below 100.  Unfortunately, they will be starting up his chemo again tomorrow.  Marlon was admitted two weeks ago and that is how far behind he is on his scheduled treatment. Shocking to think we still have to go back to that.  Sad. Because the ward is still fairly quiet, Marlon had two sessions with physio again.  He is getting stronger but his right leg is still noticeably (to those in the know) slower to recover.  He is scheduled to get an MRI to check out the clot or hematoma. Ben and Nora, the camp counselors came around to see if Marlon wanted to play a game, but instead, Marlon showed them how to make origami boxes.  They are part of camp Ooch which is now offering online camp activities but normally al...

While the nights have been better lately, last night was not the best and Marlon was up to pee at least every couple of hours.  He finds that very frustrating and is grumpy for the lack of sleep. Not too much has changed except the usual weekday doctors and ward staff were also here so not as quiet even though there still aren't very many patients.  Marlon did spend some time with physio, whether he wanted to or not.  And his nurse took out the second IV so now he just has his primary port.  His arms and hands no longer have tubes stuck in them. He has not had a fever in two days. He walked back and forth to the washroom several times rather than using the commode. A bit more exercise than he is used to but he did ok. Marlon's nurse tonight is Haley and she was there the night when we had that horrible scare in emergency.  It hurts just to remember that night and the fear and drama and yet those memories are there, sometimes more acute than others. Peacock, butt...

Another uneventful day.  The ward is almost like a ghost town.  When Marlon was first in ICU but was ready to change wards, they had to wait until there was room.  All sixteen beds in the oncology ward were full and other patients were waiting in other wards as well.  This weekend there are three patients on the ward.  It is very quiet around here.  It changes so much and so fast. During the day, Marlon doesn't have to wear the oxygen monitor anymore but he has needed oxygen at night while sleeping. He ate a little more today and he craves foods that are too much for his digestion to handle.  Taking it slow. He got some different origami paper and instructions and was happy to make boxes.  Also a moth In the afternoon he played minecraft with Paco and I went for a walk.  He is frustrated having to get up several times during the night to go pee but I don't think that can be avoided.

Another quiet day.  Weekends are normally much quieter at the hospital.  No tests, just a quick visit with resident doctor and nurses checking in and changing meds in the tubes. Marlon did some origami today.  He needed to use scissors and was unable to hold his hand still enough to do so but otherwise, he did great.  Tulip and raccoon. I went out for a walk while he hung out on the computer. His elimination is still an issue (not blood) and feelings of sickness come and go.  Down to one fever a day. He is not very strong and resists walking but I had him come for two short walks (10 feet each way).  And he was able to eat a little today.  Just dry crackers and grapes but something that is more like food.  He is anxious for more variety.

The nights have been better and he only got up twice to pee last night. Still, he couldn't fully wake up this morning.  He would wake up, feel bad and whiny, and then fall back asleep again.  He finally woke up for the day at 11 am and by that time I was starting to feel concern. Was he ok?  He seems to be! It was a quiet day today.  Haven't had one like it this whole stay.  Surgery checks in shortly after seven, and the occasional doctor visit but no tests.  And the big bonus is that he got several medications changed around and some stopped, so he is mostly using his main port.  Depending on how things go they may take one IV out tomorrow.  He still has one in his right hand and left arm. Here is nurse Alyson taking away some of the tubes (there were more!). He did get platelets in the night and blood during the day and his counts were HB 101 and PLT 39 this evening.  And his neutrophils have gone from 0 to 0.1.  While they should be a...

So many tests!  Today was a quieter day with only two.  At least they have an answer to his lungs and see it as bacterial(PCP) which is better than fungal. He went 24 hours without a fever. He still needs oxygen at night but at least he isn't getting up to use the commode every hour, maybe only twice a night.  Afterward, when I watch him scootch back on his bed I am so happy to see that he can move back much faster.  A week ago, it was a big ordeal. Every day I see him stronger and feeling better, I am so grateful! He was happy to be able to have more than just clear liquids today, and I went and got him a smoothie which he had half of.  It satisfied some of his food desires. Mindy and student, Patrick, from physio, worked with Marlon.  They did leg and arm stretches and take him for walks.  These walks are still only about 10 feet but I see much longer ones in his future. He played some minecraft with friends today for the first time since we have bee...

A lot of tears today and understandably so.  He wants to eat!!  It has been several days since Marlon has been allowed to eat anything.  He can drink and he is getting nutrition through his tube but that is not enough.  It doesn't help the taste buds or fill the stomach. Not a very restful night but better than some.  His breathing wasn't the best and while he was on oxygen, his levels weren't staying high enough.  He also had a pain in his side which affected his breathing.  Not sure if it is the one he had a while back from not moving enough when being accessed. Another procedure with sedation.  This is crazy!!  Too much and still so much isn't solved.  He is getting a Bronchial Lavage.  Checking out his lungs to find out whether the 'bumps' are bacterial or fungal.  And his blood counts are bouncing around.  They checked 3 times this morning and his platelets are steady around 25 but his hemoglobin varied between 50 and...

A much better sleep last night.  I went to bed around 10, at which point Marlon had already been asleep for a while.  We were up at midnight for a half hour and then he lasted until 5 am!  The problem was that at that time, he had a black poo that looked like all the other ones.  I cried.  Not big loud sobs but that broken-hearted tear.  I thought maybe the reprieve we had seen was done.  A few more messy poos over the course of the day but not so black.  This morning, his platelets were up to 28 (had received transfusion) and hemoglobin (HB) down to 80.  Fast forward to this evening's blood work and his platelets were 40 and HB 119!! Very exciting. The day included several tests, partially because his blood pressure has been high and they were concerned about bacteria or fungus in the lungs.  It was a busy morning.   His right leg seemed a bit better and his strength, in general, is better.  I keep reminding him to unfurl...

Operation is perhaps a strong word for last night's procedure.  Laparoscope where they did see a tear that was possibly bleeding so it was closed up.  Metal tabs were used.  So not cut open, but more than just a scope. Today, I was watching and curious.  The pooing has slowed down and gradually the colour has changed.  No longer black which is a good sign. Blood counts came back this evening with his platelets down to 8 from this morning but hemoglobin is rising.  A positive sign! He is still spiking fevers throughout the day though he had gone as long as 7 hours in between.  Not always that long. Not sure what is happening with his right leg.  Another wait and see.  So definitely looking positive.  Even if things continue going well, we are likely to be in the hospital for another week, but hopefully out of ICU and to the regular ward. In honour of the fourth anniversary of my mom's death, here she is with Marlon (not the best picture o...

This is insanity. I am scared and angry and disheartened.  I wrote this in the night.  Didn't sleep very well.  I was uncomfortable, worried about Marlon, and just so tired of this whole thing. Last night, I waited in the hall after the operation, for Marlon to be wheeled by.  I saw the anesthesiologist and he told me they wheeled Marlon up to his room via the back halls.  When I got to the room, around 9 pm, they were cleaning his butt.  Lots coming out of him.  He was moaning, coughing ever so often and his throat was very sore. He moaned on and off all night. He was, and still is, on oxygen.  We didn't know whether or not the operation helped.  We still don't know for sure.  His platelets were up to 18, and his red blood, 74.  That is a positive sign. His right leg is having tingling and weird sensations.  Both of his legs are weak and can only hold him up for short periods of time with only a couple of steps. He just spent ...

NPO -nil per os, no food or water I am sitting here so nervous, having walked the halls to discharge some anxiety.  Talking back and forth with oncology, GI, surgery, neurology, and more.  They are hoping to do the least invasive next step to attempt to get more answers.  This is a laparoscopy, taking a camera down via his mouth in hopes to get an answer.  Because his platelets are low anything has its dangers. The CT scan did show something that may be a clot affecting his right leg.  This morning, he commented on his foot falling asleep, now his whole leg occasionally gets tingling.  What the heck is going on?? I was thinking how sometimes you get the car repaired and then another problem pops up, but that is money, an inanimate object, not a life, a limb, a brain,... How will I cope during the scope?  Ugh… After I was told it could be two minutes or if he finds something, it will be longer.  I paced and breathed and paced and breathed.  Th...

Marlon made it five hours straight last night!!  I didn't mind cleaning up the mess and it was a big one.  Think breastfed baby poo explosion except black in colour and an 11-year-old.  We did have another like that yesterday afternoon where the timing in between was longer and another big mess.  Poor guy.  At least we got a chunk of sleep.  After cleanup and a sit on the commode, it took about 40 minutes, I had another shorter sleep.  So I may have gotten almost seven hours last night.  I'm happy with that. He is still NPO and grumpy about it.  The occasional ice chips and computer distraction stop him from completely losing it. He had a CT angio scan, to see if they could find the source of the bleeding.  No active bleeding but still black diarrhea and platelets and red blood count quite low. Physically no stronger but a little more aware.

Back to ICU.  Seventh room after five nights. Because they are sure it is blood in the stool, they are trying some drugs to stop the bleeding.  If the bleeding doesn't stop they will look with a camera where the bleeding is.  Now that I have heard it is blood, it seems totally obvious.  His stools look like wet dry blood. One of the drugs needs to be given in ICU so we were transferred. It was a rough day.  They have Marlon NPO.  He can handle not eating but tell him he can't drink and all of a sudden it is the most important thing. The fever still spikes but the times in between are longer and longer. He had to have another IV port put in his arm.  That is painful for him.  He did have three, they removed one a couple of days ago and reinserted one today. They needed to collect blood and Marlon's primary port would not bleed back (give blood from within).  They tried and tried, five nurses, including one from the oncology ward.  Didn't ...

  I find myself upset at this barbaric cancer treatment to be ravaging the body and causing all these problems.  And yet I know that, without the treatment at the beginning, he would likely no longer be alive. The What Ifs and hindsight. I know they are not necessarily helpful but I wonder… What if I would have gone in on Saturday or even Monday afternoon?  And I know I can't beat myself up but I knew something was up, this weekend was spent feeling concern. And yet in the past things have been so smooth and I question the other visits to emergency, were they really necessary? The night was still spent up every hour and this pooing thing can be pretty messy.  A couple of times we went through the process, got him back in bed and he realizes he needs to go again.  And then, we don't always fall back asleep immediately.  It can take time no matter how tired I am.  He also had a Charley horse a couple of times.  That needs lots of massaging and takes...

Just before bed tonight, we were offered a private room.  That brings us to six rooms that have been registered to Marlon in the four nights we have spent in the hospital. This includes two rooms the first night in emergency and tonight is his fifth night.  Not that his roommate was a loud one but it is nice to have that extra quiet.  Last night Marlon woke up several times mostly because he had a pee or poo or needed to.  Frustrating for him that his bowel and somewhat his bladder control are weak.  And with the fact he has diarrhea and is often clearing out once an hour, it is a lot for both of us.  It may finally be slowing down.  The doctor saw his poo this evening, noticed it is almost black, and thought maybe there is blood in it.  If that were the case, it would explain why his platelets are still not rising.  They try different things and have ruled out so many possibilities but still, his platelets remain low.  Blood tested an h...

He slept during the night but was up every hour.  Add diarrhea to the list.  And also his leg flexibility.  Linsy noticed on the weekend, Marlon was walking on his tippy toes.  He said it was less jarring for his headache.  Now he can't walk normally.  He can't have straight legs with his heels on the ground.  The physiotherapist did come around today.  If Marlon has to walk more than 3 steps he cries.  Very awkward. He gets tylenol to get the fever down and then when his temperature starts to rise again he shivers.  Uncontrollable shivering can last for an hour or more.  At this time it has been several hours since he has had such extreme shivering.  He just got a room in the oncology ward and when he arrived at 630 pm his temp was 39.2. The need for oxygen is greatly diminished.  This just since 3 this afternoon.  He will likely need some overnight but that is much improved. Not sure what that bright red, hot spot o...

Last night, an MRI was scheduled for 10 pm, so I kept myself up though I was ready for bed much sooner.  Time changed to 11.  With delays, back and forth, and the 40-minute procedure, it was almost 1 am by the time we got back to his room.  He did have fever in the evening.  One coming on pretty strong before the MRI, was one of the delays.  Finally got some sleep but Marlon was crying, restless, and uncomfortable so I was up regularly. There are still things they are figuring out.  Why he had the seizures.  Could be a side effect of one of the chemo drugs (methotrexate, the LP). He has had several platelet transfusions but his blood counts are not rising enough.  Still spiking fevers so they need to get the infection taken care of.  He is also still on oxygen.  They have lowered it but he still needs it.  Only when he was a newborn, had he slept more than he has the last 2 days.  Actually, it is kind of like that.  Someti...

First off, thank you so much for the support and kind words in response to my panicked message this morning.  Much appreciated. Marlon is so much better than he was this morning.  While he was not great during the day yesterday, he is still not that good. But he can talk and do more than cry and moan.  At first, it was a very muffled yes or no.  Now he can string words together and be mostly understood. The fever has eased up.  Compared to how I felt this morning, wondering if would live, I now feel confident he will recover from this. They found a bacteria in his blood and think it may have been a sort of septic shock.  Because his head hurt so bad, there was concern it may have affected his brain but his thinking is still strong. He mentioned Projectile Protection.  This is a minecraft enchantment that anything that is thrown at you does half the damage.  Marlon implied he had that. There is swelling around his port so he has an IV in his left a...

I was in bed, trying to fall asleep, and heard Marlon move.  Since he has been so sick I haven't been sleeping well, concerned about him. His mouth sores were really bothering him and he had a fever of 38.4.  I knew we would go to hospital at that time.  No waiting till morning. At 1 am we were on our way.  He was tired and uncomfortable but seemed ok. When we first checked at hospital his temp was 37.9.  His platelets were at 1 and other counts were off too.  He was to get platelets and blood as well.  During the platelets, his temperature was climbing and so was his heart rate.  They were giving him large quantities of IV fluid. His fever was at 38-39.2 and then he started moaning.  Not communicative, just moaning, crying. I was sitting behind him helping to keep him up.  Doctors trying to figure out what to do.  Then his whole body went stiff and rigid and his head rolled to the side.  This was around 5 am. They rushed him t...

This morning, I emailed Jo-Ann, Marlon's nurse, to let her know he had a rough weekend.  She didn't see the email until after 2, and called me.  I told her I didn't want to take Marlon in, as that would make him feel worse. She said she'd speak with the doctor, called back, and told us to go to emergency.  I said 'no', she said 'yes'.  She spoke with doctor and nurse practitioner again, asking about tomorrow, but they strongly recommended we go in today. He may need more platelets. I again said we wouldn't go in today.  By this time, it would have been after 4 by the time we left.  I will take him to emergency in the morning.  We have a scheduled appointment on Thursday at clinic for chemo. Overall, his headache was still painful but a little better.  He was sniffly and constantly blowing his nose.  Not runny, just snotty.  Same cold as he had not too long ago, I am guessing. We will see what tomorrow brings.

Marlon stayed in bed until after 9 and I was really hoping his headache would be gone.  Unfortunately, it was not.  Because his temperature was ok, I gave him tylenol.  It did help.  Still, to see him suffering like this, looking so pale and uncomfortable is very hard.  If he left his chair, he was trying to walk the least jarring way possible so as not to aggravate his head. He was able to eat lunch and seemed a little more human in the early afternoon.   He anxiously waited for it to be 8 so he could go to bed.  He doesn't want to go to bed too early, nervous he may not sleep well. April break is here and Linsy is so happy to have the time off from classes.  Paco has one day left of lectures, and then over the next two weeks, he is writing 5 exams.  Today's creations are a crown and a tie.

The cat woke me up this morning as he decided it was time for the household to wake up.  Then Marlon told me he was nauseous and his head hurt.  I felt he was warm, took his temperature, and saw he had a fever, 38.4.  Because he is neutropenic, that likely means a trip to the hospital.  I left him in bed and got ready for the day, getting things together with the thought we may be away for a couple of days.  An hour and a half later, at 730, I took his temperature again and saw it had gone down a bit.  Still high but no longer considered 'urgent'.  I checked again, a ½ hour later and it had gone down a little more.  I called the hospital and left a message for the oncologist on call.  I never did get a call back but all day I continued to monitor his temperature.  Because I didn't want to hide a fever, I didn't give him any tylenol for his headache which was raging.  This meant he moved as little as possible.  Any movement made...

When we are going to the hospital, I get up a couple of hours before Marlon.  Time to get stuff together to get out the door.  Yesterday, as I was waking up he woke up to go pee, and it was almost leaving time when he finally fell asleep again.  This morning, again, he woke up to go pee.  He was hobbling back to bed, crying and sobbing.  His head hurt so bad.  He felt so bad.  He did fall back asleep but the headache has been there all day, kept at a bearable pain level with tylenol.   At the hospital, he didn't get a full transfusion but just platelets.  That takes a ½ hour instead of 3.  He was so happy to be de-accessed. Even though he can move more freely, movement aggravates his headache so once again he was pretty much glued to his chair.  He did a bunch of origami.  Boot and baby elephant. He has a page-a-day calendar.  We had a good laugh out of this one.  I said it out loud several times in an effort to ...

Another quick chemo push at the hospital today.  While we were there, they took some blood to check.  I got a message from Jo-Ann, the nurse, to say he will need a transfusion.  His platelets are quite low at 8. The range for platelets is 150-400. Monday he was at 30. The chemo really does a number on his blood counts. The benefit of checking it today and getting it tomorrow is that when we get there in the morning it will be ready.  It can take 1-2 hours to get the right blood match for a transfusion. On and off, Marlon has had a headache for several days.  It really gets to him.  I keep harassing him to drink.  By evening it did seem to be calming down.  He didn't do much today and I didn't expect much from him.  Won't be long until he is de-accessed.  One more sleep.  Hopefully, he'll feel better tomorrow after the blood and not being attached to tubes. This is a picture from 2 years ago.  Paco dressed up as the Easter Bun...

Marlon was to get two things at the hospital today.  One quick chemo 'push' and then another drug he is to get monthly.  The other one runs over the course of an hour and it has never been easy on Marlon.  Today was about the fourth time.  After a little while, he thought he was going to throw up and he said his throat was feeling funny.  They stopped the drip and were going to restart it in a little bit.  They were wondering about giving him Benadryl.  Eventually, they decided not to continue with it and to change to another drug.  I hope this one is easier on him. Often, if I speak with other parents, I feel we are so lucky.  Two different moms I spoke with today and their girls were not getting clear of the cancer (two different kinds).  I am so grateful that Marlon has not been plagued by infections or fevers and that his cancer has responded.  Marlon does not like me to say how lucky we are.  He does not feel lucky to be g...