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April 13, 2021 PM

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First off, thank you so much for the support and kind words in response to my panicked message this morning.  Much appreciated. Marlon is so much better than he was this morning.  While he was not great during the day yesterday, he is still not that good. But he can talk and do more than cry and moan.  At first, it was a very muffled yes or no.  Now he can string words together and be mostly understood. The fever has eased up.  Compared to how I felt this morning, wondering if would live, I now feel confident he will recover from this. They found a bacteria in his blood and think it may have been a sort of septic shock.  Because his head hurt so bad, there was concern it may have affected his brain but his thinking is still strong. He mentioned Projectile Protection.  This is a minecraft enchantment that anything that is thrown at you does half the damage.  Marlon implied he had that. There is swelling around his port so he has an IV in his left arm near elbow, and another on his right

April 13, 2021 AM

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I was in bed, trying to fall asleep, and heard Marlon move.  Since he has been so sick I haven't been sleeping well, concerned about him. His mouth sores were really bothering him and he had a fever of 38.4.  I knew we would go to hospital at that time.  No waiting till morning. At 1 am we were on our way.  He was tired and uncomfortable but seemed ok. When we first checked at hospital his temp was 37.9.  His platelets were at 1 and other counts were off too.  He was to get platelets and blood as well.  During the platelets, his temperature was climbing and so was his heart rate.  They were giving him large quantities of IV fluid. His fever was at 38-39.2 and then he started moaning.  Not communicative, just moaning, crying. I was sitting behind him helping to keep him up.  Doctors trying to figure out what to do.  Then his whole body went stiff and rigid and his head rolled to the side.  This was around 5 am. They rushed him to the resuscitation room.  Hooked all sorts of things o

April 12, 2021

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This morning, I emailed Jo-Ann, Marlon's nurse, to let her know he had a rough weekend.  She didn't see the email until after 2, and called me.  I told her I didn't want to take Marlon in, as that would make him feel worse. She said she'd speak with the doctor, called back, and told us to go to emergency.  I said 'no', she said 'yes'.  She spoke with doctor and nurse practitioner again, asking about tomorrow, but they strongly recommended we go in today. He may need more platelets. I again said we wouldn't go in today.  By this time, it would have been after 4 by the time we left.  I will take him to emergency in the morning.  We have a scheduled appointment on Thursday at clinic for chemo. Overall, his headache was still painful but a little better.  He was sniffly and constantly blowing his nose.  Not runny, just snotty.  Same cold as he had not too long ago, I am guessing. We will see what tomorrow brings.

April 11, 2021

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Marlon stayed in bed until after 9 and I was really hoping his headache would be gone.  Unfortunately, it was not.  Because his temperature was ok, I gave him tylenol.  It did help.  Still, to see him suffering like this, looking so pale and uncomfortable is very hard.  If he left his chair, he was trying to walk the least jarring way possible so as not to aggravate his head. He was able to eat lunch and seemed a little more human in the early afternoon.   He anxiously waited for it to be 8 so he could go to bed.  He doesn't want to go to bed too early, nervous he may not sleep well. April break is here and Linsy is so happy to have the time off from classes.  Paco has one day left of lectures, and then over the next two weeks, he is writing 5 exams.  Today's creations are a crown and a tie.

April 10, 2021

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The cat woke me up this morning as he decided it was time for the household to wake up.  Then Marlon told me he was nauseous and his head hurt.  I felt he was warm, took his temperature, and saw he had a fever, 38.4.  Because he is neutropenic, that likely means a trip to the hospital.  I left him in bed and got ready for the day, getting things together with the thought we may be away for a couple of days.  An hour and a half later, at 730, I took his temperature again and saw it had gone down a bit.  Still high but no longer considered 'urgent'.  I checked again, a ½ hour later and it had gone down a little more.  I called the hospital and left a message for the oncologist on call.  I never did get a call back but all day I continued to monitor his temperature.  Because I didn't want to hide a fever, I didn't give him any tylenol for his headache which was raging.  This meant he moved as little as possible.  Any movement made the pain worse.  He listened to podcasts,

Aoril 9, 2021

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When we are going to the hospital, I get up a couple of hours before Marlon.  Time to get stuff together to get out the door.  Yesterday, as I was waking up he woke up to go pee, and it was almost leaving time when he finally fell asleep again.  This morning, again, he woke up to go pee.  He was hobbling back to bed, crying and sobbing.  His head hurt so bad.  He felt so bad.  He did fall back asleep but the headache has been there all day, kept at a bearable pain level with tylenol.   At the hospital, he didn't get a full transfusion but just platelets.  That takes a ½ hour instead of 3.  He was so happy to be de-accessed. Even though he can move more freely, movement aggravates his headache so once again he was pretty much glued to his chair.  He did a bunch of origami.  Boot and baby elephant. He has a page-a-day calendar.  We had a good laugh out of this one.  I said it out loud several times in an effort to try to guess the pronunciation.

April 8, 2021

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Another quick chemo push at the hospital today.  While we were there, they took some blood to check.  I got a message from Jo-Ann, the nurse, to say he will need a transfusion.  His platelets are quite low at 8. The range for platelets is 150-400. Monday he was at 30. The chemo really does a number on his blood counts. The benefit of checking it today and getting it tomorrow is that when we get there in the morning it will be ready.  It can take 1-2 hours to get the right blood match for a transfusion. On and off, Marlon has had a headache for several days.  It really gets to him.  I keep harassing him to drink.  By evening it did seem to be calming down.  He didn't do much today and I didn't expect much from him.  Won't be long until he is de-accessed.  One more sleep.  Hopefully, he'll feel better tomorrow after the blood and not being attached to tubes. This is a picture from 2 years ago.  Paco dressed up as the Easter Bunny.

April 7, 2021

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Marlon was to get two things at the hospital today.  One quick chemo 'push' and then another drug he is to get monthly.  The other one runs over the course of an hour and it has never been easy on Marlon.  Today was about the fourth time.  After a little while, he thought he was going to throw up and he said his throat was feeling funny.  They stopped the drip and were going to restart it in a little bit.  They were wondering about giving him Benadryl.  Eventually, they decided not to continue with it and to change to another drug.  I hope this one is easier on him. Often, if I speak with other parents, I feel we are so lucky.  Two different moms I spoke with today and their girls were not getting clear of the cancer (two different kinds).  I am so grateful that Marlon has not been plagued by infections or fevers and that his cancer has responded.  Marlon does not like me to say how lucky we are.  He does not feel lucky to be going through this treatment and really wants it to