Lovingheart

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

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

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

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

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

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

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

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

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

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

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

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

We received great news today.  His marrow tests came back clear.  His spinal fluid is also clear.  This doesn't mean the cancer is completely gone but it is not putting up a fight and is much weaker and in hiding.  Very exciting.  Because the results are so good, they have taken him off the steroids.  Yay!! Once his blood counts recover they will start immunotherapy. Marlon has a very sore throat which makes drinking and eating painful.  He drinks very little and gets painkillers in order to eat.  He gets a break from the IV in the afternoon but is getting liquid and nutrition the rest of the time.  He walked more today than he has since being admitted.  That was to go see a particular restaurant of course.  It was a disappointing day food wise for him and soon the cravings will dissipate. I am hoping for a smoother ride over the next few weeks until the bone marrow transplant.  They are hoping to move forward with that in six ...

Another not so good night.  Platelets were brought in the night.  Normally he gets them during the day but they ordered them early because he had a procedure scheduled.   Transfusions needed to be done ahead of time.  Then he was awake for a while a bit later with the pain/nausea in his gut.  This is not plain nausea as it includes a lot of pain.  He didn’t throw up but thought he would. He didn’t have to wait long to be brought down for the procedure.  In fact they woke him up.  Last word Marlon said as the anaesthesia was putting him to sleep was ‘falafel’.  Yes, another food craving. Lumbar puncture (LP) where they use a needle to insert chemo drugs into the spinal fluid.  And a bone marrow where they remove some for testing.  Originally it was going to be tested again after 4 weeks of induction treatment but I think they are hoping for positive results to allow treatment to progress.  No matter what they will not decrease t...