Lovingheart

Marlon finds waking up at 8 early.  But just wait until tomorrow when I am allowed to sleep in, all of a sudden he'll be up earlier.  Nah I doubt it.  He likes his sleep.  We were speaking with Nancy, another child life specialist, today, and came to the subject of the steroids and I realized in retrospect just how crazy-making they are.  I had heard about the emotional ups and downs and also the food cravings.  One thing that was glossed over was the sleeplessness.  At the time I saw many reasons why he wasn't sleeping well but now I see it was the pills.  Thank goodness he gets a reprieve from them The drive this morning was very foggy but pleasant enough.  Finger poke again and shortly after we got to clinic we were informed he was to have another transfusion.  If the red blood cells go below 70 then they give transfusions.  His was 72 but considering we are going into a 3-day weekend and the week of treatments behind him they felt it was necessary.  Didn't take as long…

The day didn't start too well.  Marlon couldn't get out of bed and was crying because he felt so horrible.  Nauseous and overall ick. Finally got him up and dressed and to the car.  We cuddled together during the drive some more.  No breakfast again. The hospital was a quick in and out.  Two hours of driving for a five-minute visit to get the chemo.  In the hospital for more than 5 minutes but not long.He was still feeling nauseous the whole time with no appetite.  When I see him with no appetite I feel nervous. Not wanting to go back to the feeding tube but it always looms as a threat (possibility), especially if he can't eat.In the afternoon he got set up on a Minecraft server with some friends and really enjoyed playing with others.  I was happy to see him get the chance for that.  Problem was that Paco and Linsy were at the table with him trying to do their school work.  Paco found it hard to maintain his focus so we will have to switch up the 'seating plan' as…

Marlon woke up on his own this morning so a little bit less grumpy.  Instead of eating breakfast though, he sat and wiggled a loose tooth.  No way he could eat with a loose tooth.  Playing with the tooth and talking away about how loose it is and it wasn't that loose yesterday.  We rushed out the door as soon as Louise got here so that we could give Linsy a drive to school rather than her walking in the pouring rain.  Marlon couldn't eat in the car because of the motion.Sometimes there is a line up to get into the hospital.  There are two booths where the employees do the regular covid screening and verify your 'right' to be in the hospital (inpatient or appointment or whatever).  We typically don't answer the same questions every time because we are going so often.  Today the line up was a bit delayed but then we got in, and the elevator was ready for us.  We checked in at the clinic and went in and that is where all the people were.  Never have we seen it so ful…

Marlon felt like he was being woken up very early but it was almost 8am.  He had a good cry and cuddle before he was ready to get in the car to head to the hospital.Finger poke, then to the clinic.  They check 3 main parts of the blood: RBC, aka red blood cells, platelets, and neutrophils. All of his levels were low and we were told he would need a transfusion.  He will get another finger poke on Friday to check the platelets to make sure he doesn't need a transfusion of them.What that meant to us though is a long visit.  Start to finish we were at the hospital for close to 6 hours.While the blood was being dripped in, I agreed to go get Marlon Subway for lunch.  His appetite has been quite low the past few days so I would have gotten him whatever.  When I came back, the power was out.  There are generators for things like lights and certain outlets.  Some lighting, so we weren't in the dark.  Actually it was relatively quiet. For a while there was another young boy also getti…

A better night.  The cat didn't disturb our sleep! The others woke up too early but we can't blame the cat.It really felt like the fall rainy day it was.  A home day.  Marlon finished two books, one audio, one print.  We played a game of battleship that he received the other day.  It's hard when your can't read the letters and numbers.  We were part way into the game when I realized I got the letter side and number side mixed up so we had to start over.  Oops!The headache is still there and at times stronger than others.  I did try to buy tylenol yesterday but when I looked I was so overwhelmed by the choice that I didn't get anything.  He did move a bit more today but another day where he didn't leave the house.At bedtime it was a bit of a rush because I was taking Linsy to skating and needed to leave by 9.  Based on how well Marlon did with me rushing him to bed and then out the door while he was still awake, I would say he is doing ok.  Will see what tomorro…

Trying a new barricade to keep the cat out tonight.  Not a restful night.  He jumped up again and again.  Then I heard him settle elsewhere and thought 'Phew, now I can fall asleep'.  I hadn't even fallen back to sleep when I heard Marlon's voice, 'Mom, my head is hurting so much.  Can you please come lie with me?'  And that is how I spent the rest of the night.  We did both sleep, and I still had to turn the cat away several more times.  And yes, the headache persisted throughout the day.  Worse when he moves so he didn't move too much.Paco visited with a friend yesterday and they gave Marlon a big pumpkin.  He was soo excited about the size of it.
Es had been planning on dropping by for about a month and one thing after another has stopped the visit.  With Marlon's headache we almost cancelled but he really wanted to see Keagan.  So the two boys that haven't seen each other in so long had a relatively distanced visit playing the Switch together.Es …