Day 7

Last night I explained to Kennedy how cancer and chemo works in kid terms.  I told her that cancer is an army of bad guys hanging out in her blood.  The chemo/meds are the good guys coming to fight and kill the bad cancer guys.  When she feels sick somewhere, that is where the battle is taking place.  When I was done and asked her if she understood, she said, "don't worry mommy, the good guys winned".

Mostly an uneventful day – which is a good thing. Kennedy was bit more tired and definitely not feeling like herself.  Unfortunately for K, we did not go home.  She received another platelet transfusion in the morning and also needed more blood in the evening.

The good news is that we get to go home tomorrow morning when we all wake up.  

K was a trooper about taking her meds today.  Because of the two transfusions, she needed to add Tylenol and Benadryl orally in the morning and evening to her endless meds and she did great.

We did some arts and crafts during the day and some pets came to visit around 3pm.  It cheered her up.

She is a little scared about the IV in the central line/port being removed tomorrow.  I’m scared about them putting it back in on Friday when she comes for her next round of chemo. 

The plan is to be home all day tomorrow.  No food or drink after 11:50pm, give her the steroid Friday morning and return to Loyola.  Before we leave, we need to apply a lidocain type drug to skin over the port and cover it with saran wrap so it will be numb by the time they need to access it.

As far as chemo, she will receive some under twilight anesthesia as a spinal and the rest will be administered through the port.

Kennedy is part of a clinical trial conducted by Cure Search http://www.curesearch.org/ArticleView2.aspx?id=8917 .  What this means is that her treatment is being based on her exact needs and test results.  Instead of being issued a standard treatment based on the order of one doctor, she will receive doses of chemotherapy based on her test results from a blood sample taken this Friday and bone marrow drawn on day 29.  Post-induction treatment will be based on a protocol determined by a board of 6,500 members from all over the world.  Our hopes are for her to place as low or standard risk, meaning her treatment will be less aggressive.  

I can tell Kennedy is worried about her hair and her upcoming isolation because she keeps bringing it up.  She thinks that her friends will be afraid of her when she has no hair because she is afraid of the bald kids in the pictures on other's blogs.  I'm thinking by meeting the kids like her in clinic on Friday, she'll get a better understanding that kids are kids, with or without hair.