Lovingheart

Before bed last night, Marlon's temperature was 36.9 so I expected a calm night.  He woke me up at 430 with a bad headache and a temperature of 37.9.  He took a painkiller and managed to fall back to sleep.  His temp was normal by 9an when he woke up.  What a yo-yo. Either way to the hospital to be admitted.  The amount of Blinatumomab (immunotherapy) is being increased and he will be observed to make sure he tolerates the change.  And again I forgot he needs extra caffeine with the LP.  He had some on Tuesday after the procedure but he needs more to overcome the headaches.  He had a drink with caffeine and that helped. A lot of ups and downs.  Long weekend and it looks like most of it will be spent in the hospital. The dandelions damp with the morning dew look so different. 

Not the best of days.  He had a headache and didn't feel right.  I was watching him carefully all day,  taking his temperature way too often.  He is normally pretty steady at 36.9.  A few times today, his temperature went up to 37.7.  They don't consider fever until 38.3 at which point we would be expected to head back to hospital.  He is still neutropenic, not much immune system to support him.  He took it easy and spent time in his chair and in bed.  Before dinner, he did have enough energy to go for a little walk in the woods.  He is enjoying food just fine and has a good appetite.   Heading back to hospital in the morning where he spends the weekend to be observed as the medication is increased. One year ago today, Linsy, Marlon, and I went sky diving (no the dogs did not). A little video from it: https://youtube.com/shorts/qsqdiOeXCFI?feature=shared Maybe with luck and health, we can go again next year.

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 ...