Thursday, March 19, 2009


Yesterday I had yet another appointment first thing in the morning and then Lily had a clinic appointment at 1pm. My husband has been amazingly supportive by constantly rearranging his schedule to be here with the kiddos or take Lily into clinic whenever possible. I know it's extra stress on him, and it reminds me how lucky I am to have a partner in all of this. Not only did he rearrange his schedule- he suggested that I go to Target after my appointment and he would meet me there to drop off the girls on his way into work. Now that's my kinda guy!

****As part of being positive for p53 mutation- I am going through a battery of tests. As the Gyn Oncologist told me- I'm a rock star because everyone studies Li-Fraumeni syndrome- but they rarely encounter a case- so they are actually excited to perform every test under the sun on me under the guise of "preventative" medicine. One of the cost benefits of being in the military near an army hospital-no copays. My outlook is that I endure all these screenings initially to get an idea of what we have to keep an eye on down the road. So far other than some benign cysts, calcifications and whatnot- I am tumor free at the moment. I've had ultrasounds, PET/CT scans, MRIs, and appointments in just about every body part specific clinic there is....a few more to go...but so far so good.****

While I am wandering around Target, I get a call from the Dentist's office. Oh bugger- I forgot to move the kids' cleaning until spring break. This is the day before reminder and if I cancel- we'll be charged. Surely they'll understand. Oh double bugger- Lily has an appointment too because 6 months ago we were a normal family(relatively speaking) with an occasional normal appointment. I'm pretty sure that she can't have her teeth cleaned, the risk of infection is too great- but I will check with her doc. After a short explanation and the obligatory apologies and well wishes from the secretary(dental appointment scheduling technician?) she offers to fill Lily's appointment with me since I am waaaaay overdue for a cleaning. I try to back pedal and say I would have Lily and Bella and they couldn't possibly be unsupervised and she actually offers to watch them for me in the office. I just have to bring a movie in, they'll be fine. Famous last words. If a movie was all it took- my house would be clean, I would be showered and I wouldn't forget little things like what day it is or when we have appointments. Oh all right. Thank you.

We make the transfer and I take the girls to clinic. It's always a gamble with Bella. She is good about sitting quietly while Lily has to get pokes- but then they pick on each other constantly and fight over who gets to sit where and play with what toy or read which book- you know act like normal siblings. There is a big meeting in the clinic and Miss Florence is flying solo to access Lily. Probably not the best day to have brought Bella...but we'll make due. Lily starts to panic, we talk her through it. She manages to sit on my lap for the procedure. Poor Florence might have permanent hearing loss in her right ear from Lily's screams. I fortunately still have fluid in my ears from a recent cold which is kinda like built in ear plugs. I do finally get the chance to use Phil's joke from one particularly loud evening after giving Lily a shot: " I knew there would be hearing loss involved in this treatment- I just didn't expect it to be MINE!" Bella sat quietly , but I can tell she's still stressed she might be next. She quietly moves to the stroller and I find her minutes later......Lily's counts are starting to drop. Her hemoglobin is 7.7, they transfuse at 7. They want to type and cross for Friday and we'll leave Lily accessed so she doesn't have to get poked again. Lily actually climbs up on the treatment chair herself- and sits for the blood draw. She's up to her usual antics and starts gnawing on the ID bracelet. Last time I broke her out of it as soon as we got home and lost it so we had to repeat the draw- Miss Flo reminds me to keep it on...she made it looser so it won't bother Lil. Got it. I kept trying to get pictures, but in true diva fashion she kept yelling "NO PICTURES!"

Lily gets a trip to the treasure chest and Phil and I hypothesize that trips to the treasure chest are awarded not only for kids' achievements- but for Miss Florence's. Accessing Lily without an extra set of hands was challenging- but she did it! Fortunately-there are no more Barbie's and Lily settles for Cars hotwheels. Phil says she usually tries to pick out presents for the other kids when he's there- but I haven't seen it. So I had a huge warm fuzzy moment after we got home and she gave Phillip the cars because he asked to play with them. That's my monkey!

Dr. K has been on vacation for a week and Lily spent a good portion of clinic time hunting her down. When she is finally out of her meeting, Lily acts totally apathetic towards her. She asks Lily about her birthday and starts telling Lily what she got to do on Lily's Birthday- she was in Kauai and went swimming with turtles and rays and got to take pictures underwater with her new camera. Lily perks up " Daddy got mommy a new camera for her birthday present!" Score! I tell Phil later and he has a heart to heart about squealing with Lily. The next time I walk into the room she promptly asks me where my camera is. I point to the one by the computer- "NO- the one that is your present!" Phil just groans. Gotta love em!


  1. seeing a trend w/ you having appts. everything ok??

  2. My Dearest Jen Jen,
    Please don't "File 13" my comment. You are an amazing daughter and mom and wife. You have lived with the possibility of passing on this defect to your children for a lot of years. You have met the challenge to "LIVE" even though the odds are unknown. You have decided that having children is the benefit of loving and living. I love you. I remember the day you were born and it was one of the "best" days of my life. Happy Birthday!
    Love, Mom

  3. Jen - HAPPY BIRTHDAY! I'm afraid your card will arrive late since I mailed it on your birthday, but I know you have more shopping trips left in you to use your gift. May God continue to grant you the strength to change the things that you can, the courage to accept the things you cannot change, and the wisdom to know the difference. You are strong, courageous and wiser every day. Love - Deb, David and Samantha


Lily Kay Monkey

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