Day 177

Maintenance is not what we expected.  This roid run has been hell so far and we are only on day 3 of 7.  The chemo and the steroid mixture has completely changed our little cherub into a little devil.  She’s angry, impatient, clingy, crabby and worst of all, in pain.  This is a different experience than any we have had so far with med mixtures.  Instead of celebrating maintenance, we are filled with dread and fear for our suddenly very sick child.  This pit in my stomach will not go away.  She has handled treatment so well until now.  We knew the muscle pain would come with the steroids but it wasn’t supposed to come on day 2!  The roids that used to make her eat like crazy now makes her nauseas, add that to the headaches and pain and I want to scream.  Every smell disgusts her so she will barely eat.  It has been a very hard 2 days and we still have 5 to go. 

I haven’t felt the need to blog daily because I can usually handle everything but tonight, I’m at my limit.  I wish I could take her off treatment but unfortunately, if we stop, the cancer wins and that is NOT an option.  2 more years and 2 weeks left, please pray it gets better!  Cancer sucks!

Days 169 – 176

Super Kids - Maddox won his sister cool
gear at Great America

We are on maintenance. Kennedy’s counts were at 1,000 so she was able to receive treatment yesterday.  Within 12 hours of chemo, the pale chemo-glow with blue bags under her eyes returned and we were reminded how much this all sucks.  Maintenance to both Gene and me has always been symbolic of “ease” but it’s not. We were introduced to a new arsenal of home meds and Kennedy’s aches and pains have returned and it hasn’t even been 24-hours since treatment.  We have 6 more days of steroids and another vincristine dose next Thursday.  Maybe it will get easier?  This last week has been so nice without meds, I think we often kid ourselves that everything is normal, it definitely is not.

Dad getting his face painted

Gene took Kennedy to clinic yesterday and I took Maddox to Great America.  He really has been lost with everything going on and we don’t spend enough one-on-one time with him.  He had a great day and we checked-in with dad and K throughout the day.  It was hard not being there for Kennedy but I needed to be there for Maddox; he is so often overlooked.  After clinic, dad took Kennedy to Stir Crazy, one of her now favorite restaurants.  He had bigger plans for both of them but Kennedy was just too tired to go to Build-a-Bear or Color Me Mine so she went home to sleep.

From Kennedy:

My favorite doctor is Dr. Manera and Dr. Sarvita, Dr. Heminway too.  I went to sleep yesterday.   I painted daddy’s face.

Days 159 - 168

K on the diving board at Alene's

What was supposed to be our first day of maintenance was postponed until next week.  Kennedy’s counts weren’t high enough for her first day of maintenance treatment.  She was at 735 and needed to be at 750….so close.  The doctor had the lab do an additional manual count to try and find one extra neutrophil and the next count came back at 733, even lower – no luck.  Today she was scheduled for her spinal Methotrexate, port vincristine and start of oral steroids which means she couldn’t eat until the counts came back.  Everything has been pushed back until next Thursday, count dependent.  This also means July 30, 2014 is no longer her last day of treatment, it is now August 6. Bummed.

On a happy note, she will be chemo free for one full week.  Likely the only week she will have med free for a full 2 years of treatment, so long as her counts stay up.  No 6MP at night either – a clean week to be med free. 

On the tube hanging out with Ella

The past week has been good.  Friday, Gene and I had a date night – woo hoo!  On Saturday, I attended the Tender Heart lunch put on by the Tillman Foundation for parents of chronically and terminally ill kids. This lunch was for moms only and I stood in awe as I heard Kate (Ella’s mom) tell her story of Ella and Leukemia to a room full of more than 100 attendees.  I also heard a lot of heart wrenching stories from parents whose outcome isn’t expected to be as good as Kennedy’s.  Parents that lost a child also spoke.  I felt as if the three of us, Kate, Donnna and I (fellow parents of ALL leukemic children) were the lucky ones.  The highlight of the lunch was getting to meet Bears player and foundation creator, Charles “Peanut” Tillman, who is a magnificent man both on and off the field.  He signed a Bears hat for Gene and a jersey for Ella – thank you Kate for the hat so I didn’t come home empty handed for my big Bears’ fan Gene J

After clinic with Dad - being sent home :(

On Sunday we went boating with Kate, Ella, Josh and Steve.  It was nice because both girls couldn’t go in the water so Kennedy didn’t feel left out (although K was a bit crabby all day).   We did let the girls hang out on the tube at the sandbar so long as they didn’t go in the water. On Tuesday, cousin Alene picked up Kennedy to take her swimming at her house and for a play date.  Most of the family was there and Kennedy was in her glory diving off the diving board and playing with dolls. 

We are looking forward to August 4 when Kennedy receives her Bear Hug from Bear Necessities Pediatric Cancer foundation.  We will be heading out to see Big Time Rush.  We may even get to meet them – Kennedy is ecstatic J

Days 148-158

K brushing her new fuzz

 We have been celebrating being hospital-free the last 2-weeks and living what seems like a normal life.    Well it seems normal until Kennedy wants to go swimming or to a waterpark and then we are reminded how restricted the next 2 years will be.  If that’s the worst of it, we’ll be happy.

K and her little cousin Katya

This last week we went to a birthday party, Sofia’s family party, watched fireworks, went boating, had playdates and created our own water park in the back yard with a cool new waterslide.  It’s been busy and fun and we are lucky and thankful for it to be like this.  This is a link to her playdate with Sofia and Ella, put together by Ella’s wonderful mom Kate:  http://clients.316photos.com/Other/Animoto-Private/14728855_VWjj9D#!i=1949771033&k=34xRcWG

Kennedy’s hair is starting to grow back.  She still looks blonde and may be curly, we will wait and see.  Ella’s hair grew back the exact same color and looked full and long.  Note the key word “looked” – 5 months before she is finished with treatment, half of it fell out again and it has been devastating for the family.  Losing hair twice isn’t typical but it can happen and is just yet another thing we are preparing K for…just in case.

On the boat to watch fireworks

Kennedy starts maintenance on July 19^th.  Maintenance may sound like a benign word but her first day of maintenance includes a spinal infusion of methotrexate, a Vincristine port infusion followed by a week of Dex (steroid).  A week later is yet another infusion of Vincristine.  I have loaded her maintenance chemo schedule in my work calendar, her last day of treatment will be July 30, 2014, a day I long for.

Mom and K in our backyard waterpark

Mom and dad are doing okay.  We have adopted the word “fine”.  Everything is “fine” when anyone asks because we don’t know what else to say.  Some days are “fine”, some days are awful and some days we are just numb.  Some days are great and we forget  what is going on but our bald little cherub hops in to bed with us and we our reminded of the gravity of the situation and are thankful she is here with us – living life to the fullest.