The Secret Family Life of a 2-Year-Old Leukemia Patient

(2 comments)

3:00am:  All cancer parents are finally asleep.

4:30am: Mom and Dad wake up because Aila is crying (she has returned to our bed, circa post-hospitalization after initial diagnosis).  We try to comfort her back to sleep.  She demands to go "out there" (i.e., the kitchen).  We tell her no, it's the middle of the night.  She cries louder.  She eventually sleeps again.

Part 1:

4:50am:  Aila awakens us again with her distress, saying she is hot.  She seems to be choking, which even half-asleep we recognize is code for "I need to vomit."  She throws up a little in the bed before we get her in front of the bathroom sink to finish. 

4:55am:  We decide in our delirium that it's fine to cover up the vomit with a baby blanket and lay Aila down on top.  Aila and her parents fall back asleep.  

9:00am:  Declan cries in his crib in the kids' room, and Victoria yells at Brian to "fix it."  Brian stumbles into the other room, does something (milk? toys? let's hope that's it??), and baby quiets.

9:30am: (Yes, our kids go to bed and get up LATE!  Side effect of cancer!)  Zander stumbles into our room, wanting us to change his diaper and put on clothes.  We delay him with some cartoon show on Netflix.  Not proud of this...but kind of proud of this?

9:35am:  Declan cries.

9:36am:  We pretend that we do not hear Declan crying.

9:40am:  Declan cries louder.

9:42am:  We feel guilty, but continue to pretend that we do not hear Declan crying louder.

9:45am:  Aila wakes up and demands to go "out there."  We feel afraid that this will be the end of sleep.  

9:46am:  Declan yells even louder.

9:47am:  I yell at Brian to go and get Declan.  His guilt finally catches up with him, and he stumbles out of bed to get Declan.

9:49am: By some miracle, my eyes are still closed.

10:00am:  Everyone is awake. with many demands ("I want sausage," "I want egg," "I want to go out there," "I want medsin,").  Cancer parents give up on sleep.

 

Part 2:

10:30am:  I strip the vomit-soaked bed sheets and blankets and throw them in the wash.

10:35am:  I yell at Brian because I cannot yell at the kids without feeling badly about my own behavior.

10:40am:  We change three diapers, put three kids in clothes, and make 5 eggs and 4 sausages before a demand for oatmeal comes in.

10:45am:  I finally manage to make some coffee.

10:46am:  I yell at Brian again.

10:50am:  We empty the dishwasher.

 

Part 3:

11am:  6ml lactulose (for consitpation)

11:01am:  4.5ml sulfa (profilactic antibiotic)

11:02am: 2.4ml oxycontin (you know what that is)

11:04am: Fill up water cup with scoop of Miralax.

 

Part 4:  Our crazy Saturday life

 

Part 5:

11pm:  12ml lactulose (for constipation)

11:03pm: 5ml benadryl (for nausea)

11:05pm: 4.5ml sulfa (Aila demands to squeeze the dropper into her own mouth)

11:07pm: Fill up water with scoop of Miralax

11:08pm: 2.5ml of oxycontin

 

2:55pm:  Cancer Dad finally falls asleep.

3:00pm:  Aila wakes up with red cheeks, yelling.  Falls back asleep after some water.

3:14am  Anxious cancer Mom still wide awake.

 

Fight, baby.  We'll sleep when you're cancer-free.

Mama

 

ps  We're not going "out there" until the morning.

 

 

 

Comments

Kelly 8 years, 12 months ago

"Fight, baby.  We'll sleep when you're cancer-free." Your words show your strength and love for your family. You are lucky to have each other.

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Angela Tana 8 years, 12 months ago

Vicky,

I can go without food, I can even go without liquid, but after the crazy long nights of a 7 year architecture program I can no longer go without sleep. When I lack sleep because of crazy illnesses or other unforeseen circumstances it haunts me and turns me into a crazy mom. I remind my oldest child that not allowing people to sleep is a proven form of tourture. I'm hoping those couple of hours here and there is enough to keep you going!!! Your blog is amazing and I bet it can easily get published one day.

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