Friday, November 30, 2012

Chemo, Diet and Thanksgiving

Kennedy finished her steroid-round and had chemo on Wednesday, the day before Thanksgiving.  Maddox came with us to clinic and we were glad he did because it was a long day; we got in at 9am and finally left close to 1pm.  Maddox kept us entertained.  

Kennedy gained 4 lbs in one week from the steroids, nearly 10% of her body weight.  The weight gain resulted in Dr. Manera wanting to up her nightly 6MP (mercaptopurine) oral chemo for her new “surface area”.  The goal is to have the kids on the maximum tolerable dosage.  Sounds nice right?  Tolerable?  Tolerable is a good word since the medication keeps Kennedy nauseated most of the time, I couldn’t imagine giving her more. 

I can’t believe I did what I did but I actually negotiated with Dr. Manera. I told him I would make sure Kennedy got her weight down to pre-steroid weight so the increase wouldn’t be necessary.  We would need to trim the weight in 3 weeks;  much harder than it seems.  One week on her diet and she’s actually gained almost another pound.  Poor K, my stalling tactics won’t survive the next visit and her 6MP will most definitely be upped.  Stupid cancer.
Maddox’s birthday fell on Thanksgiving this year.  Since we didn’t know how Kennedy would feel after chemo and from her roid withdrawl, we decided to celebrate at home.  We felt being home would be the most comfortable place for her and also a place we could focus on Maddox turning 8.  Grandpa, Grandma and Uncle Sergey, spent the day with us. 

By Saturday, all was seemingly normal again and K lost her roid rage and became a complete doll again.  We had our family photo shoot on Saturday (THANKS LIDIA)and Sunday K got to celebrate Maddox’s boy-birthday party with him at Laser tag.  Being the token girl, she had the time of her life.  On Monday, I unfortunately got the flu so am on lock-down.  Praying that everyone stays healthy!!!!

Tuesday, November 13, 2012

ER Visit and Steroid Week

At Loyola ER
We are prepping for clinic tomorrow and are prepared for our new-normal life to be yet once again turned upside down.  Kennedy gets Vincristine through her port at clinic tomorrow and also starts a 7-day run of steroids.   It seems as if just as things start to become normal, we are tossed back into a chemical nightmare.  The side effects of this chemotherapy include hunger, puffiness and intense muscle/joint pain.

Kid Yoga
Since I haven’t blogged in awhile, I figured I’d catch up now.  We had an unscheduled ER visit last weekend.  The cough that I heard in Kennedy’s classroom by a classmate just 3-weeks back made its presence at home 2 weeks ago.  When visiting her class, I heard the thick congested cough and had a full blown panic attack.  I called the teacher, nurse and principal and insisted that all of the kids in the class need to use sanitizer immediately - I'm sure I sounded crazy as I told them I wasn't sure I should continue sending Kennedy to school.  Up to this point, only Kennedy used sanitizer.  I ordered 4 enormous gallons of alcohol-free sanitizer from Amazon and as far as I know, all the children are using it and the school has me on crazy-parent watch.

Halloween Goodies

Unfortunately, my efforts were a little too late.  Kennedy’s cough resulted in a temperature bouncing between 100.5 and 100.9 and we were sent to the ER.  We were there for 4 hours where she needed two blood draws, one from her port and the other from her arm. 

Since Loyola is also a teaching hospital, it seems we also got to play test-doll for a trainee learning how to access a port.  I should have known better when the head nurse came in with two younger nurses.  It was the way the assisting nurse was feeling around K’s port that gave it away.  I asked if she had done this before and she assured me she most certainly had.  Of course she missed and the head nurse had to fix the error.  The same error happened earlier when drawing blood on Kennedy's arm as I saw a different nurse poking around with the needle.    I forgot how protective and on guard we as parents need to be, we are our child’s advocate.  Gene and I were on edge after the two misses.  Thankfully Kennedy’s counts were high enough so she was given a preventative dose of antibiotics and sent home.
Circus Fun

Outside of the hospital visit, the last month has been good.  We had a Halloween party for the kids, we went to kid yoga and we were spoiled by Jon Troy at Feld yet again and given front row and stage seating at Ringling Bros circus.   Kennedy is loving school and has been going to gymnastics at the Y.  We are keeping busy and trying to have fun.  Hoping for a quick and painless roid run.