Sunday, December 7, 2008

Tis the Season

The carolers are out in full force at the hospital. Julie and I had just been talking the day before about how the strangest things can set you off emotionally. Apparently for me it's Jingle Bells sung by teenage carolers on the peds ward. I think 2 nights of no sleep contributed to my sob fest, but it's hard to say. Fortunately 2 nurses collected me into the office and Julie distracted Lily while I exorcised the demons. yesterday, there was a Christmas Party that Santa was attending. Phil took Lily to see Santa, I'm glad I wasn't there. I'm having a tough time dealing with the jolliness of the season and how people's demeanor changes when they see her. It's like being the world's biggest buzzkill. Nothing says Christmas like a look of total sadness followed by a forced smile- hmm, actually that covers most work parties, never mind.

This hospitalization was due to Lily having yet another virus plus a bad reaction to the antiviral she was on, which decreased her kidney function. The virus caused the fever and new rash. She got some extra hydration and her fever has been gone for 24 hours. All of her Blood Counts are up and she's not neutrapenic, although she is treated as if she were for extra precuations. Which means cycle 2 starts tomorrow. 1 down, 7 to go. She only has a thin layer of peach fuzz on her head and her eyes look perpetually sick. But every now and then you get a precious Lily smile and then I remember why we are doing all this.

Lily was "discharged" yesterday and came home at dinner time. Stewart and Jackie were on hand helping me around the house. The plan was for them to help with the kids so I could get to the hospital, but I seem to be catching the virus the girls had and thought it best to stay home. I think Phil's words were "I've GOT it here- stay home and rest". So Phillip and Kiera went off to play with friends and I utilized Stewart's height to retrieve Christmas decorations and Jackie helped me get the tree ready. Considering we've spent 11 of the last 21 days at the hospital- I'm not sure we'll get another chance. On the postitive side, not only do I have an amazing group of friends - my mom does as well. She was scheduled to work Christmas, but her Co-workers at St. Anthony's North all arranged their shifts to cover for her so she could be with us. I am so happy she is going to be here to help make the season magical for the kids despite our crazy circumstances. Thank you to everyone who had a part in this- that is truly the most wonderful gift.
We go back in tonight for hydration. There was a question of whether or not we could do the cisplatin because of her decreased kidney function, but it is back up and we are a go for torture session 2. I questioned the sanity of packing up and coming home only to turn around and go back- but everyone had a good night's sleep so it was worth it. It also helps that they let us leave our stuff in the room. So really it was more of an overnight pass than discharge. Lily is still sleeping. I went to bed at 8, so I've been up. Kiera found another package of ornaments somewhere and is putting them on the tree. I think the plan for today is for Phil to catch up on yardwork and if everyone has energy- to go see the zoo lites and then check in at hotel Tripler.


  1. Hi guys! I read a snipet in my Good Housekeeping magazine about how a "super-shake" containing 32 grams of protein helping chemo patients have a decrease in nausea and need for anti-vomiting drugs. Protein powder was added to the shake. Powdered ginger capusles helped also. Thought I would pass it along, although I'm sure you know these tricks already!

    Yesterday, Adriana fell off of the kitchen chair onto the tile floor and gave herself a minor concussion. Our brief stay at the ER and the 6 or 7 times of vomiting was exhausting. I can't fathom how you are doing all you are on a daily basis!

    I lift you all up in prayer everyday for strengh, energy and healing. We are always thinking of you all. Much love, Ang and family

  2. Oh I'm so glad you got to have Lily home for at least one night. It is amazing to me that you had the energy to decorate too! Looks like you had lots of Santa's helpers. I can't wait to be with you all. Love, Mom(Grandma)

  3. Dearest Jenny and Phil - Please take the time to have your picture taken with Lily, if you can manage it. You will not regret it. Always the mom with the camera, I regret not having been IN the pictures with my children, no matter what. It is great that Roberta can be there for Christmas. Please consider allowing another grandparent to spend time there too. The kids look beautiful decorating the tree! Their perspective is very different from yours or mine--they see the shiny ornaments and boxes and bows at the bottom of the tree. They don't see what goes on at a higher level, and they will never remember it. My parents tell me they remember how horrible some of their homes were while in the military, but I only remember how cozy our homes were and my mom and dad's faces, and special candy canes or cookies, and my brother and sisters. I don't remember how much or little money there was, or that there was one present or ten. I just remember my family and the beauty of the season. Love you all so much - Mom

  4. Hi Jen and Phil,
    I have been reading your blog everyday - you guys are doing great! I have been keeping my school kids (120 of them) up to date how Lily is doing - and they are praying their hearts out for all of you. Many of the adults in the parish are remembering you guys also - all the way from Michigan. It is tremendous to see all the friends you have from all over the country - and good to see the comments from some of the folks I haven't seen in a long time. God Bless you all!
    Uncle Dick

  5. Hi Jen and Phil, we just wanted to let you know that we are thinking of you and send lots of love and hugs to you all.
    Chaps, Faye, Anna and Zoe

  6. Jen & Buddha,

    Jaime and I are thinking and praying for Lily an you guys. My parent's church is praying too.

    Please let us know what you need. Don't tell my wife, but I can do yard work. PLEASE LET US KNOW.

    Magoo & Jaime

  7. Hi Jennifer, Buddha, Phillip, Kiera, Lily and Bella,

    BIG HUGS to every last one of you an Pooh too!!!

    Jennifer, I can see why some Christmas carols would send you into a downward spiral. I even cried when my cousin graduated high school. It's a mom thing.

    You are absolutely doing an amazing job. I think it helps to let the dam break every now and then and let your emotions take over....
    as you always say...
    Hugs, Jennifer Bell & the gang here in JAX (I just wish I could give the hugs in person)


Lily Kay Monkey

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