April 20, 2024

Happy Friday  Saturday Sunday!  I started to write this Friday & last night and then Cooper's pain (headache, back pain and jaw pain got pretty intense- so trying again now)

Cooper had his LP on Tuesday.  We have the best nurses in the pediatric cancer unit, since we were there so early one of our favorites jumped on the XBOX and played a quick game with Cooper after they accessed, drew labs, went through medicine and we waited for the oncologist. Doctor came in and let us know that labs were good, liver enzymes are still high but to be expected.  We were told that no adjustments to his nightly chemotherapy would be made.  Talked about the rash on his face and how there is not really anything that we can actively do- since it is from the chemo he takes nightly.  But doctor gave some holistic approaches (particular lotion and OLIVE OIL).  We have not tried either because we have been just managing his pain and the amazing side effects of the steroids...      Tuesday was a long day with us getting to the hospital at 7:30 and then home around 3:00.  After the LP and intrathecal chemotherapy they had to give him some Benadryl again, because he woke up from his sedation super itchy.  His back was also super sore when he woke up, so I took a deep breath and prayed.  Praying that his pain and side effects would be minimal.  Love that we had a room full of people loving on Cooper and also taking care of us as well.  Hannah & Sable of course came, and Sable came right to me and plopped down at my feet.  (She must have known that this mom needed some extra love/support).  

We were happy when he asked for Chick f la on the way home, that meant that he wasn't so nauseous and punky he wouldn't eat.  Since we were starting steroids, we knew he needing something in his stomach.  He ate and then slept for a few hours and then woke up with back pain and a headache.  So the whole thing where we can't give him Tylenol or Motrin for any type of ache or pain- sucks as a parent.  So imagine waking up and having what is called a spinal headache/back pain. (Tiny amount of cerebral fluid leaks through the puncture sight- causing a headache) But we cannot give him over the counter medicine to take care of it.  So the steps we were given was to have him drink caffeine, lay flat and use a heating pad.  This worked until it didn't.  

Thursday I took off to stay with him, so Dillon could take Dalton to his golf tournament in Amarillo. (Where there were 35 mph wind gusts and the high was 45). Cooper was pretty uncomfortable most of the day.  Headache seemed to be manageable but still there.  Friday I was able to go back to school and Dillon stayed home with Cooper.  He called oncology to get permission to hopefully be able to give him Tylenol.  We finally were given the green light, and it seemed to help.  Until it didn't.  So Saturday morning when he couldn't even get dressed with out pain, we called.  (Dillon called as I was coaching Dalton and some of his friends in a 3 v 3 basketball tournament).  The on call oncologist called in morphine for Cooper.  So within ten minutes of taking it he was a new kid.  It was fun to have him back, cracking jokes and up and moving.  

This morning we were up early for Cooper's follow up cardiology appointment.  It was a long morning, arriving at 8:30 and not seeing the doctor until after 10.  We were relieved to hear that the cardiologist doesn't need to see him again, unless something pops up.  His tachycardia episodes were caused from anxiety.  Stupid mental aspect of this illness and journey. 

He has been resting most of today and the goal is to get him back to school tomorrow.  Praying hard for all the things to settle down and even out- so that he has some good days this week.  I am having a surgery on Thursday, so also praying that I can bounce back quick... Grateful that my dad is coming to be an extra set of hands to help.  

Thanks for the all the calls, well wishes and prayers.  We appreciate them all!

🧡

#CooperDrakeStrong