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.

Days 141 - 147

Celebrating Miss. Brave Kennedy

At Loyola celebrating the LAST IN-PATIENT chemo treatment!  Today marks admit 6 of 6 and almost the beginning of maintenance.  Maintenance will require 2 years of oral weekly/daily chemo and in-clinic administration of spinal chemo infusions and vincristine on specific days but no more scheduled hospital stays.

We almost didn’t make it for our admit today as Kennedy’s counts were only 540.  Had they been under 500, we would have been put on hold and sent home until next week.  Counts this low make her susceptible to just about anything so they have to be careful to not overstress her poor little cells.  I was able to make it to the clinic and join dadfor her intrathecal (spinal infusion) today at clinic, the first one I’ve been to in awhile.  It’s sickening to see your 5 year old drugged.  When she was under for the few minutes, she said “Mommy” and “Owwwww”.  It was heart breaking.  After she started coming to, she said her standard….”four eyes, Mommy, Pappi (papa - dad), I love you” – she was drugged, silly and adorable which eased the pit in my stomach.  She has an amazing attitude.  I guess kids say all sorts of things when coming off of the ketamine.  We were told that one little boy told Dr. Manera he was an alien and to get back in his ship and go home. 

Dancing at the Wedding

Kennedy was busy as usual over the past week.  We went to cousin Chad’s wedding on Saturday and took a trip down the river via boat on Sunday.  On Monday, K hung out with her best friend Sofia at the park.  Tuesday she had piano lessons and yesterday she just hung around the house which was probably a good thing since her counts were so low.  She played with Jackie at night for a few hours.

Tonight we are celebrating Kennedy’s being BRAVE.  Phyllis from the Disney Store gave Kennedy a BRAVE gown.  She was so excited when I brought it to the hospital that she wanted to wear it right away and wore it for a good part of the night as we played and danced around the room.  She is getting shakier as the methotrexate takes affect so we now we are hanging out “plugged-in”, K with the ipad and me with the blog.

Cheers to her last inpatient stay for chemo and praying that we do not have to come back for any reason.

Days 131 -140

The last 9 days have been great.  Kennedy has been going to Art in the Park on Tuesdays with Sofia.  Yesterday Kennedy went swimming for the first time since being diagnosed and did great.  Today she went to clinic and the doctor is very happy with her progress.  Molly came with us too which was nice company for K.  Outside of some occasional nausea, Kennedy seems like a normal 5 year old.  Her hair is slowly coming back which is good but not  that important.

I haven’t been blogging because I’m too tired and there is not much to say.  Just trying to keep with the hustle of everyday life and a sick kid is VERY TIRING!!!  On top of it, there hasn’t been much to report since things have been status quo (which is good!).

This weekend we have a wedding and will hopefully make it on the boat to get K out for some air.   Part of me is worried things seem too normal considering what is going on with her but I guess this is our new normal.

Blog from K:

We went to clinic today.  We took a picture with Dr. Manera.  My friend Molly watched me and played with me.  I was brave when the needle came in.

I went swimming in an inside pool and I jumped off the diving board.  We were with daddy on father’s day and throwed the bean bags and we went on the slide and we went on the swings and we went in the sprinkler.   

K and Sofia after Art in the Park

K Swimming

Kennedy and Dr. Manera

Days 125-130

We just celebrated the completion of our 5^th admit, only one more to go.  Dad took her to clinic on Thursday where she had her spinal infusion in of methotrexate in clinic and was admitted to the 4^th floor by 1pm.  Her methotrexate drip was started before 5pm so they clocked record time – way to go Loyola peds!!!  By the time I got to the hospital at 6, K had not napped so she was fast asleep by 9 with potty breaks every 2 hours.  She was a bit crabby from the poking and prodding so we didn’t do much with our 3 hours.

Friday we played in the playroom for a bit.  Maddox and Grandpa came to visit for a few hours which made time fly.  We also saw Nina (the 11 year old recently diagnosed) who was also in for chemo.  I am always amazed at how resilient children are.  Kennedy, Ella, Tyler, Nina, Camilla, Nick – all these kids with cancer that I know have the best attitudes and are so strong.  It is easy to forget they are or have been seriously ill.

Dad came on Friday night to swap places with me.  I didn’t leave the hospital until nearly 9 because Kennedy started crying each time I tried to leave.  I came very close to spending the night again but there just isn’t room for all of us so I made the trek home.  Maddox slept at Grandmas and I met them both at Maddox’s baseball game on Saturday morning. Afterwards, Maddox and mom went back to the hospital where we helped pack and spring K from the big house.  The rest of the weekend was busy, we went to Christina’s wedding on Saturday and even made it to the boat on Sunday.  Dad really wanted to keep K at home but she insisted on boating so away we went; lathered with sunscreen and the boat top up, we hit the river for a short cruise.

Today Kennedy went to Art in the Park with Sofia.  We signed her up last minute so she can hang out with her BFF on Tuesday mornings for the next few weeks.  The class was full but the park district thankfully made an exception and got her in.  Now K can get out of the house at least one day a week and tag along with the Simonian family.  I’m grateful because I know she is safe with them.  We ensured she was well equipped this morning with masks, hand sanitizer, lip balm, hats and sunscreen in her little purse.

This week K will hit my cousin Alene’s indoor swimming pool.  When K was first diagnosed, we were banned from swimming ANYWHERE for 2+ years but the rules are getting more lenient based on her progress.  Since the pool is private, barely used and has housed no leaky children in years, we got the shaky thumbs up from the overprotective Dr. Manera.  Public pools, lake water and the ocean are still off limits and will remain that way.  Kennedy is so excited to swim anywhere and I’m praying we aren’t overdoing anything.  I just want her to feel like a normal kid and swimming is one of her favorite things to do so we’re giving it a try.  Baby steps.