Lovingheart

  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...

  September 19, 2020 Overall a good day! Marlon wasn't feeling great in the morning but he did have something to eat to get his morning pills down.  Not so stressful.  This morning he had 10 pills to get down which is better than the 15 he had to down yesterday for breakfast. He is enjoying eating and satisfying his food cravings, which are in big part because of the steroids.  Sometimes it is hard for him to listen to his body saying 'enough' because his mind still wants to enjoy more wonderful flavours. While Marlon started the day feeling off, Linsy was worse.  She called in sick to work, something she has never done for work and only if really necessary for school.  She finally came downstairs at 1 and nursed a bowl of soup for several hours. In the afternoon I went to Sobeys.  Boy was I nervous and that sounds so weird to me to feel that way for a trip to the grocery store.  First of all, really the first time out since back at home and I fel...

  September 18, 2020 Amazing how little time it takes me to get distracted by day to day life and back into old routines! Today was definitely a better day than yesterday.  Marlon still had some discomfort through the night but slept quite well.  Better than the hospital. In the morning he was stressed about the pills but got them down and enjoyed his breakfast.  Toast with nut butter and jam and sunny side up eggs on toast.  It has been a long time since he has been willing to have eggs and enjoyed them. While I did a lot around the house I still made time for regular cuddles with Marlon.   He didn't do much physical activity today, never went outside, but he was ok. The big stress was the taking of pills.  Not long after breakfast he was worrying about having to take his evening pills.  He wanted to enjoy as much food as he could during the afternoon before he had to worry about pills again.  I was saddened to see how the stress of the...

  September 17, 2020 Today was a rough one! From waking up this morning Marlon did not feel good at all.  Dragged out, uncomfortable, and just plain icky.  Next round of chemo started late morning but by that time Marlon was so bad that he felt like he was dying.  He was crying and writhing in the bed, sweating from the discomfort and pain, though it wasn't quite pain. He was barely able to eat lunch, or even drink anything. A couple of times I called the nurses in. Once he was crying loudly and he didn't want to go home if he felt this bad.  A lot of them felt that it was anxiety around leaving safety of hospital and going home.  I didn't believe it to be anxiety but they assured me the medication wouldn't make him feel like he was decombusting (his term for it). He was disconnected from the IV and cleared to leave.  Eventually, he took some gravol and for the half hour it took to get to car and be on our way he was ok. We hadn't even pulled onto the ...

  September 16, 2020 Turns out Marlon was not really sleeping last night when he was moaning and restless.  It was close to midnight by the time he did throw up.  After that he finally slept and didn't get up this morning until almost 9.   He did not feel much better.  He just barely managed to eat some breakfast and had to take 10.5 pills with it.  Didn't do much today.  Rested and probably had extra device time but he was feeling pretty bad. Again he ate a smaller lunch and I took him outside for a bit.  When we got back in he rested and then finally had a nap.  When he woke up after 430, he was feeling a little bit better.  Nine pills with supper but he did manage to eat with lots of rests n between bites. He just wanted to watch his own videos this evening and then the nurse came in with one more pill.  So we walked down to the cafe (I pushed him), got a hot chocolate and he pushed the wheelchair back to his room.  It ...

  September 15, 2020 As of last night we've been in the hospital for two weeks.  I was told today Marlon will be discharged on Thursday.  More treatments Thursday and then we continue at home with returns for more treatment and checkups.  I was told that if all goes according to plan treatment continues for 2 years and 3 months. Marlon slept a bit better last night.  After breakfast this morning Mindy and Tori from physio took him to play some Xbox.  A bit more physical, with a fair bit of movement.  Marlon came back from that exhausted. I realized today that while his spirits are up, he is back to talking a mile a minute about anything, and he has a good appetite, he just doesn't feel good.  Sometimes worse than others.   I bought him pizza for lunch which he happily gobbled down several pieces.  Then I took him outside.  I make him walk a little bit on the grass and then push him around for a bit.  He complains a lot....

September 14, 2020 The good of the days is evening out a bit.  Perhaps I am getting used to it and yet I do think his mood is still good but a little more mellow. His mind is more active and today Marlon even spoke of seeing friends.  When things were bad he didn't want to see anyone. He is speaking more of his friends, of his memories, and of his lack of memories. We did go outside after lunch for a walk though his physical energy levels are still so low that he didn't walk too much. The big deal of today is that Marlon had to start a new pill, the one that targets the ph+ leukemia.  The nurses and doctors were concerned about him getting and keeping it down.  This pill is bigger than the ones he has been taking and it was decided he would take it between lunch and supper. Do we cut it or will he take it as is?  What is the chaser?  So much hype but Marlon surprised everyone and took it down without much fanfare.  Yay! Unfortunately by the time supper...

  September 13. 2020 Moving his arms and legs, doing simple, repetitive exercises. Another first!   Overall, not quite as hyper as yesterday but still happy and chatty. Marlon has been eating well again today.  He enjoyed his regs with breakfast and I bought him his wrap for lunch. Still using ice cream to get his pills down but he is less stressed and anxious. Just before lunch, he was told that as long as he can continue to drink lots of liquids he can be disconnected from his IV.  Much more freedom.  I got him outside for a while.  Unfortunately, Marlon really does not want to be out for too long.  Some beautiful trees on the university property!  We sat at the base of a tree for a while and then I pushed him around for a bit. One of the resident doctors has played Mario Cart on the borrowed hospital Switch with Marlon a couple of times.  So today I went out for a walk myself and when I came back Dr Kevin was just finishing up playing...

  September 12, 2020 What an amazing day!  What can I say?  I remember the kid I saw today.  The one I heard talking at hyper speed and almost non-stop.  The boy that seemed super hyper.  Excited! Animated! Yes, I haven't seen that boy in almost two months!! Add to that side effects of drugs such as heightened moods/personality, and food cravings.  Phew what a day!  What a treat! Marlon turned into the bargaining master.  I bought him a pizza yesterday and he hasn't thrown up since then so he has been telling me that I need to buy him another pizza.  What is there not to like in pizza? He keeps reminding me it has fruit, vegetables, protein, and carbs. He wants to eat eggs, though he hasn't wanted to eat eggs in years.  He saw a wrap in the cafe at the hospital and he really wants to try that wrap.  Then non stop bargaining about how good it is he wants to eat food, to try something new, it looks fresh and healthy.   ...

September 11, 2020 Our morning started early.  I heard the nurse exclaim 'Marlon, you pulled your tube out!'.  The bed is wet, Marlon is wet, the nurse wakes him and he says he is cold and has been cold for a long time.  He has always been a restless sleeper so he likely rolled and pulled the tube out of the port in his chest.  The saline solution continued to drip, some of his blood backed up, and everything was wet and bloody.  We changed the bed, changed Marlon, and then the port needed to be changed and new tubes put in.  A freezing cream which does nothing for Marlon so he cried while she poked in the new port. After that we couldn't sleep but Mar was feeling pretty sick and not wanting food.  Eventually he ate some cereal and I got the yogurt to help him take his pills.  Mere mention of pills and he is anxious, panicked almost. The container needs to be out of his sight. I peel the top off the yogurt and he gags.  The power of smell....

September 10, 2020 I often say we are doing our best to take it one day at a time.  If I think about today compared to yesterday.  If I think about all that is to come.  If I think about the many struggles in a day, I understand.  I understand how taking it one day at a time, how dealing with each struggle as it comes is really so much easier.  If I think to myself we have at least 3 more weeks of intense treatment it is overwhelming.  If I think of each meal's struggle to down the necessary pills and the support required to keep it all down it is overwhelming. Each day as it comes. For the first part of the day Marlon we not allowed food or drink because he was to be sedated.  During that time we had a visit from the dietitian speaking of food.  Marlon got several food cravings from that talk. Then Marlon was put to sleep.  Lumbar puncture and a new needle in the port with new tubing.  Yesterday Marlon had a blood transfusion and the tu...

September 9, 2020 Before Marlon was admitted and he was in so much pain, looking at me pleading for me to help him and I just felt so helpless. And now he is looking at me pleading to help him feel better and all I can do is hold the space, let him know I am here with him, for him.  When he cries and says he can't do it.  When he just feels so sick and nauseous and I do my best to support him in keeping the food down.  And the sick feeling just goes on and on even though they give him anti nausea medication.  I step away for a bit and as I come back I see the nurse rounding the corner to flush his vomit. Occasional short lived moments where he is talkative and alive but mostly just sick. The pills come for him to swallow and he starts 'panting', the anxiety rising, and saying he will be sick.  He can't swallow the pills.  In the morning the first two pills bring up his breakfast.  A while later we manage to get them into him and they stay down at least...

September 8, 2020 Big news today: I was told we may be going home on Thursday! This news is both scary and exciting at the same time. Sure it will be nice to be home but there is a lot of security having the nurses support as you navigate the meds and stages. Marlon ate breakfast and felt so sick afterwards he had to lie down and rest.  A couple of hours later he perked up a little bit.  Just an overall unwell feeling, his body is hurting, he feels so sick, and still has pain in his back and one of his legs. Lunch was pretty exciting for him as it was the second best hospital meal he has eaten here.  He enjoyed it while eating and again didn't feel the best.  He went on the computer for distraction and I met with the social worker to discuss paperwork.  I came back and he was sitting there crying because he felt so unwell.  Then he threw up.  No more of that lunch he enjoyed so much.  They gave him medication for the nausea and he rested. Dinner w...

September 7, 2020 Lots of cuddles. Not the best of days.  The night wasn't that great.  Marlon was pretty restless and didn't sleep in.  He felt bad upon waking, improved a bit, had breakfast and then crashed after that.  Because he had another round of chemo today there were two different drugs before hand to help him deal with it. First was benadryl and that knocks Marlon out.  He dozed on and off while the chemo was administered.  Luckily for me I was distracted by Maria, the child Life support person, so it wasn't quite as devastating to see.  Shortly after 2 I went and got Marlon a Subway sub which he happily ate and then felt so bad again he had to sleep more. He didn't feel well after waking up.  We tried to go outside a bit but merely being upright was too much.  A bad headache, dizziness, and just an overall unwell feeling.  Couldn't make it off the ward even though Marlon really wanted to.  A bit of supper and snacks and w...

September 6, 2020 How silly of me to wake up expecting today to be another day like yesterday. The day started off well.  Marlon sleeps in until after 9.  We have a cuddle for a bit and then he is happy to eat breakfast.  Then the pain in his back/waist starts up again. He also has a bit of a headache.  Try to get him to move a bit but he isn't ready until after pain meds. Kelsey, the nurse for today tells us there is a private room that has come available.  If we don't want it the patient coming in tonight will get it.  Until now we have had a semi private to ourselves, view of hospital, another ward.  We go look at the other room and like the view.  Sure we are right on the main road but not far away are trees and the hill.  AND a big plus is the fan in the room is not quite so loud. Marlon pushes his own IV pole today and does a couple of trips back and forth between the rooms carrying some things over.  We already have too much!! The...

September 5, 2020 Marlon is the most like Marlon today that he has been in a while.  The pain isn't so bad, his speech is more clear, a bit of a gleam in his eye, appetite, and so much more. I wish we could just wipe our hands, say thanks for helping, go home and forget this ever happened.  I can pretend it is all over. So bittersweet. We just sat and watched a movie together and now he is drawing a dragon.  He hasn't been able to draw or even pick up a pencil in several weeks.  Both arms are moving, eating a snack, stopping to chat.  Oh this is the boy I know. So while I keep telling myself to enjoy the calm before the storm I feel a sadness knowing it will get worse before it really gets better. He enjoyed the feeling of the 'new' hair, laughing at the sensation saying he felt like he had a bowl on his head and if he turned the wrong way it would fall off.  He wanted to wash it and decided he likes the messy look.  So he walked to the shower, I helpe...

September 4, 2020 Oh my gosh.   I hear all the names of the drugs to be pumped into my child and I think 'wow!'.  He's never even had tylenol until we got to the hospital.  Soo overwhelming. And yes the treatment is about to begin and I know that but when the two nurses roll into the room, one wearing a plastic gown and goggles, and start inspecting the syringes to make sure they have the right poison.  It is real.  Chemo has begun and I cry and cry but try not to let Marlon see the emotion.  I have to excuse myself to go into the washroom so I can let the tears out.   So many things pumped into Marlon.  One thing after another. This evening Thomas, Paco, and Linsy came for a visit.  Marlon was allowed out in a wheelchair.  We went and sat at a bench under an oak tree and chatted and hung out.  Marlon got healthy snacks from dad: fresh pea sprouts and a fresh garden carrot. Then Thomas took out the scissors, did the deed, ...

September 3, 2020 A very emotional day.  We both slept on and off throughout night.  Today we broached the subject of hair loss.  Lots and lots of tears shed.  Marlon identifies with his hair.  He feels like he is nothing without it and is very attached. So hard to witness and understand.  I did say I would gladly shave my hair along with him but he doesn't want that.  It would make him feel worse if I did. I suggested getting his dad to cut it so we could save his tail but he can't do that.  Not ready to cut it. We had a talk when I asked him if he knew what he had.  I didn't realize how little he knew.  I told him leukemia which is a blood cancer.  More tears.  'I don't want to have cancer'. We decided we wouldn't dwell too much on that but take each day as it comes. Lots of people donating and offering support and help.  Also very painful for both of us to be on the receiving end of this.  He is very grateful and s...

September 2, 2020 Finally some sleep.  Never without interruptions but sleep nonetheless.  Awaken several times in the night.  Sometimes to check signs and then for another shot of morphine.  It doesn't take long for the blotchy red areas to grow on his neck and into face.  Ali stops the drip and administers benadryl to stop reaction.  Second reaction so it is decided he is allergic to morphine.  The benadryl puts him to sleep. In the morning he is allowed no food and only a couple of sips of water until 10.  They also start him on another pain medication and he slept for several stretches.  Around 1130 he hobbles across the room to the waiting porter and wheelchair.He gets wheeled down for an ECG.  He is close to being ready for more pain help so his legs are bothering him and he is very uncomfortable with the probe on his chest.   By the time we get back to the room he is panting from the pain.  And he wants a drink....