October Chemo and Other Stuff

K at Build-A-Bear post clinic

Today’s clinic visit was very stressful for Kennedy.  As visits become less frequent, she has started to develop anxiety about having her port accessed.  Mom and dad have the same anxiety.  When she was first diagnosed everything seamed surreal and we became numb to the needles and treatments.  Now the treatments are traumatic for all of us and we drove to clinic in silence.

The visit itself was overall good, K had a spinal infusion of methotrexate (aka intrathecal). This treatment infuses chemo into her spine to prevent any rogue cancer cells from traveling to her brain.  

Dr. Sarvita was our doctor for treatment today and K adores her.  We spent extra time waiting for counts since the tube (kind of like what they have the banks to bring money from car to teller) was broken and no one knew it so her blood work didn’t make it to the lab when it was supposed to– this added an additional hour to today’s visit and procedure. 

Kennedy’s counts came back extremely high (over 3500) which is very odd.  They think it is likely due to her possibly having some type of virus and her body fighting it off.  The doctors weren’t too worried and the high counts allowed us to proceed with the chemo.  K was put under with Ketamine and the procedure took a total of 5 minutes (but a half hour from beginning to end).  Coming off the Ketamine, Kennedy was loving and silly as always and she continued to tell us how we had 4 eyes and 2 noses as she was coming off the drug.

Dr. Manera came downstairs from the hospital to spend some time with us.  Apparently we are still the only low risk diagnosis made this year based on the new protocol.  We are also the only one in clinic on K’s protocol.  Dr. M was very happy to see us and us him. Megan from Child Life also hung out with us while we waited.  We got to clinic around 9am and left at 12:30pm.

K and daddy with her cute little pigtails

After chemo we took her to eat and to Build-A-Bear.  The procedure wore her out so we went home to rest and later headed to the reading night at school.  This evening she has been complaining of nausea and back pain (from the pokey) but is overall in good spirits.

I must vent a bit   I have to say it is so frustrating going through what we did during the day and then walk into a public area (like school tonight) and see normalcy.  Nobody knows what our day was like but we do.  I’m intrigued that people can find importance in protecting peanut-free cookies and am amazed that we could get shamed for grabbing one when not allergic to nuts at tonight's book night.  When this stuff happens, I want to scream.   I mean seriously, do people even have a clue of what they stand for sometimes?  If there was a shortage of peanut-free cookies, I would have gladly gone to the stores and bought the whole shelf.  And it’s great they have cookies for kids allergic to peanuts or gluten but what about a special section for a cancer patient that can’t sit packed-in like a sardine with all the kids on the floor of the gym?  I mean, if a kid doesn’t get to eat a cookie, they will survive.  If my kid sits among the stuffy noses and coughing, she could be hospitalized. 

I understand the world doesn’t stop for Kennedy and I am fine that there wasn’t a special section available for her at school tonight.  But with that said, why should we protect cookies?  I'm sure the peanut allergy kids would be okay without special food even if they ran out - just like I was okay there wasn't a special area for a cancer kid.  Okay, enough ranting; I’ve had a long day and I’m probably not even making sense at this point. 

Great America visit October 2012

A quick overview of the last 3-weeks:  K loves school and has been doing great.  Kennedy is a daredevil and dragged us on both the Demon and Eagle at Great America last week and has been living it up like any normal kid.  She still has emotional outbursts and I’m not sure if they are chemically induced or just part of being 5.  She continues to take daily chemo of 6MP (Mercaptopurine) and weekly doses of Methotrexate.

Next in-clinic chemo round is steroids and Vincristine that falls around Thanksgiving.  In the meantime, any in-clinic visits will be blood-draws.  As the weather gets colder and flu season approaches, we are staying positive and praying that K stays healthy and happy and we only visit clinic for pre-scheduled treatment/blood draws.