Lovingheart

'My ears are open, the rest of me is dead'.  How can I not cry?!?  He mumbled this to me when I was quite concerned.  He had finished vomiting again and seemed comatose.  Who knows how many times the poor boy threw up today.  It is amazing he ingested anything. Then early this morning there were the tears. So many tears and so many times he cried 'i can't take it anymore.  I can't do it.  It's just pain, pain, and pain!' He slept until 2 in the morning.  Then the discomfort started and then the pain.  In his bladder.  They took his urine off for testing and there was blood in it. Eventually, he fell asleep again around 730.  And I realized that we wouldn't be going home today. He didn't have much energy. No surprise!  The pain had gone away and his urine looked normal. He even had a blood transfusion as his red blood cell count was too low. But he was anything but normal.  Hardly moved all day.  Hardly kept anything d...

  Shortly after Peter arrived on his first visit to the hospital, Marlon called for the container because he was going to vomit.  Peter anxiously looks around for a place for himself to do the same.  He is a squeamish person.  In yesterday's visit, Peter calmly sat by as Marlon retched over the container.  Ok maybe not calm but somehow it is different.  I think of this, as, once again, I sit by as Marlon retched and empties his insides.  Poor guy. On the good side, I do notice he is getting a little stronger.  He doesn't complain as much when he has to walk to the washroom but every other walk, he does complain loudly and resist. He did a couple of exercises with Tori from physio.  Small ones that he can do without getting up off the bed. He had chemo. He sat up in a chair and listened to his book. He went for another tricycle ride.  Different team members came visiting. All that tires him out.  After each 'event' he rests for a whi...

Another rough night for Marlon with cramping and pain and several bowel movements throughout.  Luckily after 5 this morning things calmed down and he slept until 9. A quiet morning.  The chemo round was fast and though Marlon wasn't feeling great he has had much worse.  I got him to walk around a little bit.   In the early afternoon he was disconnected from the IV as it was only for liquids and that can go through the NG tube if he won't drink, which he won't. Mindy and Tori, the physio ladies, came by and had Marlon peddle around on the tricycle. Marlon has been plucking his hair out by the handfuls.  It makes me think of the way one might pick at a pimple or peel skin after a sunburn.  Even though so much has already come out he still had a decent head of hair.  But because it was everywhere Marlon decided to have Maria come by with the clippers.  He actually enjoyed the process saying it was soothing and the vibration of the clippers on hi...

 A nother hospital day.  In some ways it feels 'ho-hum' and yet it typically isn't.  By the time Marlon throws up several times, new chemo starts up and several team members visit it is not a quiet, 'lonely' day. Once again Marlon didn't sleep much.  I sometimes wonder how he survives the days.  Lots of abdominal cramping in the night along with several trips to the washroom to continue the bowel emptying process.  Again he wants my hands on his abdomen to ease the pain so I find a way to sleep beside him with my hands on him until he tells me we need to go to the washroom again. Morning comes and he isn't even disconnected from the drip before he throws up the first time.  Then they start with the chemo again.  Two different ones put into the IV and then one more in the evening via the NG tube. Nurses, nurse practitioners, child life specialist, physio, social worker, and then also because they are concerned about his mental health (anxiety/ depr...

  When we first started this journey and Marlon was admitted to hospital, they were priming us to be prepared to be in-patients for 4 weeks. After one, they say we may be able to go home tomorrow and we didn't feel prepared or ready. But since Marlon has been admitted this time, I have not been prepared to stay and been wanting to go home. At first it was Sunday and that was good.  Ok, I can handle waiting until Monday.  This morning I was so psyched that today was the day we were to leave. When I was informed that it would be a few more days before we could leave I was ready to cry.  Darn! However I must look on the bright side. MRD test last Thursday is Minimal Residual Disease which has positive results and shows no detectable disease.  Which is good! Very good in fact! Treatment continues as the past has shown that if they stop now the disease comes back, perhaps with a vengeance. Tuesday - Friday this week, and the next 3, he will have chemo, four days in a...

  Thr ee falls in three days.  This is not what I expected! Another fall after a trip to the washroom today.  It has been hard enough to convince him to walk anywhere.  Even though the washroom is across the hallway, he doesn't want to walk the 20 feet to get across the room and hall. I finally convince him to, and he falls just as gets back to the bedroom.  He feels he tripped over his shoes.  When you are just shuffling your feet it doesn't take much to stumble, and when you are so weak, you don't have what it takes to stop that stumble from turning into a fall. Later in the afternoon, another patient was brought into this room.  I had a chat with him when I was going to the fridge which is on his side of the room.  Arabic family. Marlon was curious to hear his mom talking on the phone.  I just couldn't stop smiling from my previous connections to the language.  He is turning 16 soon and youngest of eight children.  He has the sam...

Marlon had a pretty rough night.  Not sleeping much, restless, and uncomfortable.  So I was often right beside him in the bed and when I looked at the sweater I had been wearing in the night, the arm next to Marlon was covered in hair.  Though you can't tell by looking at him, he is constantly losing hair.  He rubs his hands though and has several strands entwined in his fingers. He has a lot of discomfort in his back and that is from the bone marrow procedure on Thursday.  While Peter was visiting today, I took Marlon to the washroom.  After he finished washing his hands, he stepped backwards, tripped over my foot (or his shoe), scrambled but crashed to the ground before I could get him.  His scream pierced the air.  I hit the call button in the room and a nurse came.  He was pushed back to his bed. That fall aggravated his back. He said his back was paralyzed however he has been slowly recovering as the day goes on.  Last time he went ...

 I t is hard to see this weak little boy that just barely hobbles along, needs help getting from lying to sitting or sitting to standing.  He considers a tiring walk going about 20 feet though for him it is a shuffle not a walk. I lay down beside him today and my breathing changed as I overcome with sobs as I thought of what he is going through.  But I try not to cry in front of him.  He is watching me. He was feeling tired of the constant formula being pumped into his stomach through the feeding tube.  It is not really that much but more than he is used to.  Tonight formula will be pumped into him for 14 hours at 65ml/hour. They are hoping tomorrow night will be 12 hours at 80ml/hour. At first they were saying he could even be discharged Saturday because he seems to be handling the tube well.  He said no.  So likely Sunday.  Once here he didn't want to go home.  Marlon feels safe in the hospital, and he has most of what he needs which i...

  October 1, 2020 We got up early this morning to get to hospital for 730.  Luckily Marlon didn't have to take pills because he was being sedated so no food or drink.  He was whiny and feeling bad.  Finger poke and then to clinic.  His weight was down again.  We spoke of him getting a feeding tube and I was surprised when the doctor said it would mean being admitted for a few days.  Marlon asked about the pain level and whether he would be able to take all his pills via the tube.  The doctor went off, spoke with the pharmacist who said, while not ideal, the imatinib could be crushed, dissolved, and into the tube.  Everything else no problem.  Marlon said yes to tube.  Doctor asked me and I said it was his choice.  After a while he was brought into the room where they put the sedative in via his port and he dozed off. I met Louise, our driver, outside as I had left my bag in her car thinking we were going back with her.  I ...

  September 30, 2020 ' My life is nothing but pain, torture, and suffering!'. Marlon's outburst for the day which included several variations of the line above and tears and that pleading look in his eyes.  I am sorry to say that today was another bad day.   In yesterday's 'wail' report I hinted at something I had done or not done (aka dropped the ball).  Marlon is bunged up.  So today he was in constant discomfort with abdominal and stomach pain.  He didn't want to eat or drink or move.  Sat there, crying ever so often and plugged into his audiobook.  So down, so hard to witness.  And of course I feel like I should have gotten something in him sooner to get his bowels moving again and I was slow to move.  I was warned this could happen but at first he was very regular.  I could have prevented this. The pills have been more of a struggle and today was particularly bad, having to take a break after every pill or two. Speaking of...

  September 29, 2020 Oh I know I'm doing fine.  I know I'm doing it.  I'm doing the best I can but boy was today a hard day.  A day that I feel I have made mistakes. Forgotten to do a couple of things I was supposed to.  Not stayed on top of things.  And yes I know, none of us are perfect and we all make mistakes and we all have days like this. Marlon was having a fit and crying because he feels so bad, the pain, the discomfort, and the stress if it all.  He doesn't want to hear of people that have fought the disease and come out ahead.  He is in it right now and doesn't want to hear the success stories. And he wants a weekend where he can get away and forget about it.  He wants holidays from his pills. He is living it and not loving it. It is hard to be ok with these outbursts.  I let him cry and I acknowledge his stress and pain. I can't make it better for him.  I can't take his pills for him. And afterwards I understood his outbu...

September 28, 2020 Marlon was saying today that it has been over two months since he has has a day free of pain.  Today is the 4 week mark of his diagnosis. Last night was a bad one for Marlon.  Though he let me have some sleep, he got up grumpy and tired saying he hardly slept all night.  He wanted croissants and maple breakfast sausage but we didn't have any. The day never really improved.  Discomfort, pain, tired.  Poor guy! He did his usual of back and forth from bed to chair.  He read, he listened to book and played some Minecraft.  In the afternoon I had him take a proper bath rather than just a sponge bath.  He won't take a shower because he doesn't want to stand too long.  I had to help him into the tub and it was shocking to me to see him fully naked.  He is so skinny.  And then to stand up from tub he needs help as well.  At least he got properly cleaned. I don't think I mentioned it but the other day when he was maki...

  September 27, 2020 Another morning that starts pretty slow for Marlon with little appetite.  Paco made us eggs, but now Marlon has decided he is done with eggs again.  Darn! I see him blaming food for making him feel unwell when I think the problem is not what he eats. I lay with him for a bit. We finished watching a movie we started the other day. I did some other things for a bit and then his appetite returns.  The middle of the day, pill-free time. He ate all sorts of things. We knew Peter and Moira would return for supper again bringing Thai food.  They did, and after pill time we ate together.  Then we looked at Linsy's pictures from her trip out West.  She came back the day before Marlon was admitted to hospital so I hadn't had a chance before. Marlon was just quietly doing his own thing, drawing and lying down.  As much as he enjoys the visits they are a lot for him. Sometimes throughout the day he gets quite flushed and says he feels ver...

  September 26, 2020 When the day starts the same as the past few have, I wonder what I would ever have to say without repeating myself again and again. Breakfast and he doesn't want to eat but he does just enough to get his pills down.  He just wants to cuddle in bed. No energy, no appetite. I feel bad as if I am the one that is making him suffer.  Shouldn't a mother be able to help her child with something other than cuddles.  I guess not.  As anyone knows sometimes you can't make it better but it is a good opportunity to just BE.  Support  However Marlon did have lunch and perked up a bit after eating.  Thomas and I were talking and Marlon walked into the room with a few strands of hair in his hand saying that as he was running his hand through his hair they painlessly came out.  And I was beginning to hope hair loss may not happen. My brother, Peter, and sister, Moira, were coming for a visit.  He liked that idea.  He decided Mo...

  September 25, 2020 Definitely feeling the effects of yesterday's treatment. No energy and he just trips back and forth between his chair and the bed.  At the beginning of treatment, Marlon needed a lot of cuddle time.  Then not so much.  Today he keeps asking for cuddles and that means me leaning back on the bed and Marlon between my legs, his head back on my chest.  For longer periods.  I ask if I can get up and he just mumbles an 'unh unh' (aka NO, not sure spelling of it). Definitely the most lethargic he has been lately.  Not even the energy to talk, with eyes at half mast if they are open at all. No appetite, no fantasizing about all the foods he wants to eat. I feel for him yet I also forget and try to be enthusiastic or suggest we do something and I just get the blank look. I noticed both last night and this morning how common place his vomiting is.  He was sitting next to me, just barely finished throwing up and I was eating.  This ...

  September 24, 2020 'This whole thing has ripped my mind to shreds' This is what Marlon said to me in the middle of the night when he wasn't sleeping.  He hardly slept at all.  He did fall asleep after i woke up but that just meant I had to wake him up to have breakfast and his pills.  He was unable to finish his pills.  Just couldn't do it. Louise from Cancer Assistance Services Halton Hills (CASHH) drove us to McMasters.  She has been driving as a volunteer for over 22 years!! A good driver and a wonderful person. Marlon and I sat in the back, he ate, and listened to his book.  When we got there he was pretty upset to go to finger poke but Nate, the child Life specialist, was there and tried to help Marlon breathe through it.  He survived.  We went upstairs to the clinic and Marlon's intestinal pain started.  It was bad and he was upset and we were put in a room where he could lie down.  The pain was still bad and he threw up....

  September 23, 2020 I have been thinking about a mom I met at the hospital.  In December she noticed that for 11th day in a row her 9-year-old daughter has headache.  Hmm.  She took her to dentist.  No, everything fine there.  Took her to optometrist.  Eyes are ok but they told her to go to emerg.  An enlarged nerve they saw.  Tumour on brain and it was removed Christmas Eve.  After recovery, she saw the spark again in her daughter's eye. Phew.  Then she was called in February, get to hospital as treatment was to begin.  The tumour was cancerous.  Radiation burned the girl's throat so she has a feeding tube and now can't keep anything down.  They just came back to hospital while we were there because it was pretty bad.  Mom challenged but says in some ways it is easier to be in hospital because she is there to attend to her daughter.  At home she is mom as well to her two younger boys, driving around, cook,...

September 22, 2020 The drive went surprisingly smooth to and from hospital. As soon as we got in the car Marlon put on his headphones and listened to his audiobook.  I can imagine again just the two of us going to hospital together but he still wants me in back seat with him.  Thomas drove us today.  Getting a ride from CASHH on Thursday. Three hours we were in hospital. At one point Marlon was crying and yelling at me that he is so tired of being poked and hurt.  They tell him it won't hurt much but to him, it is very painful. First thing when we get there he goes to 'finger poke lab' where they do just that and collect blood to test it. Then we go to clinic and Marlon gets an overall check as well as vitals, and weight. Because he is feeling so bad they were thinking to connect his port (a more painful poke and that is when he had his fit) to check more blood levels and rehydrate. Luckily for Marlon the main thing the doctor wanted to check (his glucose) had been c...

September 21, 2020 To be expected I suppose, that today wasn't the best.  He is almost always animated around meals and food but otherwise, it was a pretty low day for Marlon.  After breakfast, I left for my appointment to sort out issues with my SIN card.  Before I came back I had strict orders to make sure I brought more garlic stuffed green olives. While I was gone Marlon was in bed resting. He felt a bit better after lunch but didn't do much or move much.  Later in afternoon, we took him for a short test drive to get a sense of how it might be tomorrow.  He is not looking forward to all the driving. I think perhaps I have been a bit more bold and adding sometimes as many as 3 pills to each bite of ice cream.  Backfired today.  He had taken a couple down and next spoonful I could just see him exploding.  He got a taste of it.  He took a bite of food, guzzled some of his drink but it didn't work.  The food he had eaten thus far and his...

  September 20, 2020 I could get used to days like this! Breakfast was smooth.  Paco made eggs for everyone.  Marlon took his pills without too much fuss.  As long as we take lots of breaks he can get them down.  Sometimes it does look very close whether they will stay down or come up. I puttered and tidied a bit this morning and Marlon rested.  He was comfortable enough on his own but not really feeling great. In the afternoon a friend stopped by with his mom and brought some toys.  The boys played quietly for almost an hour.  A big deal for Marlon to be upright that long.  A nice treat for him too.  Hoping to set up a couple more times with friends. As per his request we picked up Thai food for dinner.  After eating Marlon even had the brain power to do some division questions for math. Then the 5 of us played cards (Uno) together.  Nice to have a semi-normal day. Marlon's appetite is out of control but his desire to drink is...