Sunday, November 30, 2008

Not to the bottom yet and still breathing.

I loaded Bella in the car Saturday to go to the hospital and the van wouldn't start. Darn it Murphy, we need to have a talk. That morning Bella was screaming at Kiera about something. Kiera informs me that Bella had the keys and was playing in the red car so she took the keys away. Safe move. Bella often tries to start her lil red cozy coupe with my keys and they are routinely confiscated before they are lost. Well ,as Kiera then informs me, Bella was playing in the van in the garage. I probably should have checked it at that point, but something else came up. So fortunately I made a call, got a jump and the battery and alternator both checked out.


I make it to the hospital and Phil is drained. About 5 minutes after he left I have the clear picture of why, lily is clearly not feeling well and it is showing. She wants this, no that , no not THAT, that. Do this, do that, no do it this way. Wow this is a bundle of fun. And then there were medicines and a shot to give. The whole time she is screaming for daddy and Santa Claus. That's funny, he swears that she publicly disowned him approximately 3 times prior to my arrival. When she gets mad she tells him "you're not my daddy anymore." Morale is low. We keep muddling through. By 11 my desire to put up with any more muddling is over. We are going to bed, end of discussion. I am laying next to her on the oh so comfy hospital bed and she is glaring at me. What? "Stop that" she tells me. I haven't moved, I'm barely even breathing. "Stop that, THAT!: She then takes to fingers and shoves them up my nose. Breathing? "Yes, stop breathing." I think I'll go sleep over on the pull out chair. She rolled over and yelled at me a couple of times but went right back to sleep. I think I was grateful.




I know she has got to feel awful. I know how terrible I felt with morning sickness and that was normal- I wasn't being poisoned. Her counts are still dropping. Her platelets are at 23(23,000 per microliter of blood) normal is 150-450(150,000 to 450,000/micriliter). When she gets to 20- she'll have to have a transfusion. The problem is that it only gets worse during subsequent treatments. The bone marrow plugs these cells out at different rates and each time you deal it a major blow like chemo it takes longer to recover. Her rash is also spreading. There is a specialist( the ID man) coming in tomorrow to take a look. They are guessing that it's shingles(related to chicken pox)so she has also been started on IV antivirals. She rolled over the other night and banged her knee on the guardrail and it left a cut. The injection sites bleed more and bruise more.


Poor Pooh gets tortured almost as much as Lily. Lily was given her own disposable stethascope. She spent a few minutes trying to find his heartbeat and caught on when I was tapping on the chair. Pooh has been poked and prodded and still has bandaids that may be permanently attached to his fur. He's has his temperature taken(waaaaaaaaaaaaay below normal- but then again I can't really say what normal is for a bear). He also was almost forced to wear the pulse-ox overnight and was only granted a reprieve when Lily got all tangled in the cords and decided that he didn't need it. Fortunately the staff has been very accommodating to Pooh. I did notice he didn't get yelled at for breathing.

8 comments:

  1. Jen!

    Just thinking about your family and praying for Lily! Thanks for the update ;)

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  2. I can not believe you have the energy to continue this blog; you're amazing. We're also praying for Lily, we hope those counts take an upward turn real soon. Love you all.

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  3. By the way....Happy Birthday Phil?

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  4. Oh Honey, to know that you are still breathing and to see that Lily still smiles means the world to me! I'm with you in spirit.
    Phil, aren't you glad that you had survival training to prepare you for this battle? Thank you for being such a good daddy. Happy Birthday! Hugs for everyone. Love, Mom

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  5. Jen, Lou just sent me an email to tell me what's going on. I'm sorry to hear about everything. I'll keep all of you in our prayers. This blog is such a good idea. Love to you all, Jen Harris

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  6. She IS a little fighter. I'm sure you keep reminding yourself that it's a GOOD thing she's such a strong person...even though it must wear you out. Keep breathing! We are loving you and praying for all of you! xoxo

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  7. Lily is an amazing little girl. She is in our prayers. Does she have the book "Oncology Stupology"? I have an extra copy from when I worked in Child Life. I'd love to send her a copy if she doesn't have it already.

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  8. Jen, I am laughing and crying all at once. You are an amazing mom and I am so grateful to be your friend. Thank you for writing. Stay strong and you and Phil hug each other for me!

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)