Thursday, October 23, 2008

A New Normal and a Big Decision

Daily Report: No date yet for surgery, still early November. Chemo therapy is recommended. Leg Sarcoma looks Aggressive.

Knowing that in our not so distant future, what we now know as normal is going to be a thing of the past...we are trying to be "normal". So when Lily wants a cupcake and a chocolate chip cookie followed by a chaser of chocolate milk for breakfast...we have to be good parents and ensure under all definitions of fairness that Phillip, Kiera, and Bella also get nothing but junk for breakfast. No, I am not going to make eggs, you will eat this cookie and like it. Phillip, a realist (like his mom) looks at me....really I can have a cupcake? Big picture people, big picture. Skinny has never been in my deck of cards and I've already passed along a predisposition for much damage is a cupcake gonna do? So once the whole clan was good and hyped up on sugar, I was about to make my exit to Walmart and leave Phil to try and control the reverberations. Like I would let them eat nothing but sugar for breakfast under my watch.

I have my bag, my list, and 1 foot out the door when the Lily monkey grabs my leg...I wanna go with you mommy. That's not a horrible idea, the point of the trip is to get a booster seat that doesn't rub her owie. So 20 minutes later, she is dressed, has pooh, nee-nee(blanky) and we are ready to go. I am returning phone calls on the way to and from the store as Lily nods off. We are pulling into the garage when she asks if we can go see Maggie, her very best preschool bud. I tell her she's lucky cuz daddy and I have to go to the doctor so Maggie is coming over to visit with her mommy. That appeases her. She struts inside and immediately reports to Phil 'You and mom have to go to the doctor. I am staying here. I am NOT going with you.' Can't blame her on that one. Last night Phil finally convinced her that we could cut off the ankle bracelet from the hospital because we were home. She shows me a naked ankle and says 'we'll put my bracelet on after my bath.' I told her we didn't need it at home and she had a look of complete panic 'but I don't want owies, my bracelet says Lily Mallory No Owies'. Poor thing.

So Phil and I had our first and probably last 'date' for months. The ambiance was a bit sterile, somewhat outdated and from what I've heard the food...not so much. We walked through the doors and were immediately shown to our table...a very short table. With 4 very short chairs. The sign on the door reads Pediatric Oncology Waiting Room. Fortunately there are adult size arm chairs and a sofa- so I sit there to save my back. Phil wants to make a point and squats down into a chair designed for a 3 year old. Not sure what point that is, but he's makin it with style. The chief of pediatric oncology joins us and plops into another pint size seating apparatus. The Solidarity of Men. Since there is no real good starting point, do we have any questions? I flip open my notebook and start firing away. What kind of sarcoma? When do we find out? How does it affect the surgery and further treatment? As far as the Stage 3 ACC, could the cells be an artifact from resection or slide preparation? Could chemo effectively combat both tumors? I had quite a few questions stemming from a lot of questions people have asked me that I didn't have the answers to. Many of the questions don't have answers.

Here's what we know: The samples from the adrenal are definitely adrenocortical carcinoma. The tumor was 9x8x6 cm and weighed 253 grams. For reference :A can of chicken noodle soup weighs 298 grams. The cancer cells were seen on the slide going through the capsule, so we have to assume there are some stragglers hangin out in Miss Lily's belly. We don't want that to be the case, but it's the best position to assume for treatment- irrelevant to the position we feel like we're in which is somewhere between a rock and a block of concrete. The leg tumor is a sarcoma and looks to be aggressive, but was unidentifiable merely under the microscope so it has been sent away to be identified. The BEST treatment for both is surgery. Got that partially tackled. I am confident that Doc E got all of the tumor around the adrenal that was humanly and somewhat microscopically visible. She will get as much of the leg sarcoma in November as she can. So where do we go from here? Chemotherapy is the best bet medically speaking. I don't like the idea of chemo or radiation. Both make you very sick. They kill good cells as well as bad. They have side effects that are worse than any flu bug or morning sickness I have experienced and on top of it you lose your hair. Not a big deal for Buddha, and I spend way too much on razor blades, but for miss fro baby whose pride and joy is her big hair-that's fairly traumatizing. Going back to big picture- Lily without hair, but still having Lily is a good result. Lily being sick for awhile and then kicking cancer's butt...very well worth it. Lily being in pain for a result that may or may not present itself-not a great thing. Lily losing her hearing, another possible side effect- pretty scary. Kidney failure- heck we just saved one from the adrenal cancer monger- to go and kill it off with chemicals is counter intuitive, but again- could save Lily. But it might not. But it could. She is tough. Kids are amazingly resillient. And it could still come back. And she could kick it's butt again.

Chemo with mitotane is standard treatment for this tumor. A slightly more aggressive approach is what they call a multi-agent protocol combining 3 other tried and true chemo agents which haven't necessarily been "proven effective" for this tumor. A clinical trial protocol if you will- in the comfort of tropical Hawaii. Realistically we would be looking at 8 months to a year of treatments translating to 3 days to a week inpatient at the hospital each month, if not more to treat side effects. I considered adding a poll to the blog"chemo-yes or no?"- but let's face it there are only 2 people who can make this decision and so Phil and I have a big weekend of info crunching and gut crunching ahead of us. So that's where we're at. Thoughts?


  1. Jen,

    You are the strongest person I know. Hang in there buddy!

  2. Jen and Phil,

    It is impossible to say what I am feeling for you guys. You are facing everything with compassion and courage in a situation which I can not even pretend to fathom. For that reason alone whatever steps you take will be the right ones. I love you guys and just wish we were all close enough for a hug.
    Uncle Tom
    and Aunt Pat

  3. Dear Jen and Phil,
    I am a friend of Kevin and Amy's in Altus, OK and I wanted to let you know we are constantly praying for Lily and for your family during this time. She is truly precious.

  4. Jen and Phil,

    Just a note to say we love you guys and your in our prayers during this impossible decision.

    Hugs and kisses from across the miles.

    Bean and Ross


Lily Kay Monkey

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