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.

Days 120 - 124

It’s been a busy few days.  We played with the neighbors all weekend, had play dates, piano lessons, went to Maddox’s baseball games, and celebrated dad’s birthday last night.  For the most part, we are keeping up with “normal” life but we’re all paying the toll one way or another.  We should slow down but we haven’t missed a beat.  When Kennedy acts normal, we forget she has cancer and that her body is undergoing pure chemical hell.  Every so often she is reminded with nausea, body pain and extreme fatigue – she could barely stay up for dad’s birthday last night.  For us as parents, we also forget what we are going through emotionally until we are so tired, anxious or depressed we can barely function.  We act normal and for the most part feel normal until we hit a wall.  Tonight I’m at a wall.

It’s hard to keep up with the blog, work and life in general.  No one would guess it since we haven’t dropped a single ball…yet...but I wish we could.  Life doesn’t stop for illness, in fact it moves faster than ever.  I hope we can keep up.

Off to pack for Kennedy’s admit tomorrow.  

Days 117 - 119

Thank goodness the steroid pulse is over.  It wasn’t as disgusting as the last one but could have been had we not been prepared.   Kennedy did have some back and leg pain but it was mostly alleviated with Tylenol/Codeine and Aspirin - no morphine needed.  Dad took K to clinic yesterday for another chemo dose of Vincristine.  Post pokey and clinic, they went to Rainforest Café and Build-A-Bear where Kennedy added a mermaid cat to her collection.  She did well and her counts were in the 7,000’s due to the steroid.  It’s kind of a fake ANC count but I’ll take it.  When she got home she crashed for 2 hours and missed her piano lesson with Kaitlyn.

Last night she was nauseated and this morning wasn't feeling well either.  I can’t wait until this Viscristine/Steroid mix is out of her system.  Her intense appetite has already subsided and she's been sleeping a lot.  She has moved back into our room this week and has somewhat taken over (when we can watch TV, when to turn off the bathroom light, how long and loud we can talk, etc).  I'm  hoping she'll be back in her bed soon.  

We are planning on enjoying the weekend at home.  Next week is a hospital admit…only 2 more to go and then maintenance!

Days 113 – 116

Overall we had a great weekend and Kennedy handled the steroid well…until this morning.  We had a 6am wakeup call of back pain, we gave her an ice pack some Tylenol and she went back to bed.  When she woke up again at 8am, the pain was still bad so we called the doctor to determine if we could give her aspirin based on her last platelet count.  Luckily we got the go ahead which saved us/her from trying morphine.  I stayed home to make sure all was okay and we had a good day lying in bed.  We also went outside for a while and I read her a book on the trampoline and after we stared at the trees and clouds and just chatted.  It was a great mommy-daughter day.

This weekend we were on the go.  We did some shopping, hosted and attended play-dates, had dinners with friends and even made it out on the boat.  I must admit boating is a lot more stressful these days.  Not only do we need to make sure we have the right food and supplies with us but we also need to plan out the meds and timing.  We haven’t trailered our boat in years so pulling it out of the water at nearly 11pm was a bit of challenge.  Yes, I said it….11pm.  We got out on the water at 3pm and Kennedy was having such a good time, she wanted to go eat at our restaurant on the chain for dinner and when all was said and done, 11pm.  

We stopped by our old marina where our trailer was last year.  The new owners built a deck and screened sunroom, it looked amazing.  It was sad knowing we wouldn’t be spending our summers there anymore.  We also saw our neighbors Dave and Janie.  Dave finally retired last year and was diagnosed with liver cancer this year.  It was sad to see both him and Kennedy together with their bald heads and distended tummies (although Dave has always been bald).  They both had the infamous look of cancer.  It’s odd how cancer patients have a similar look.  I’m not sure if it’s the disease or the treatment that makes it that way.  Anyway, it was sad thinking back to last summer compared to the beginning of summer 2012.

Kennedy received her Make-A-Wish folder in the mail today.  It is something we are all looking forward to when we near the end of her treatment.  Maintenance is less than 2 months away and then only 2 years to go until she’s free of the port.  I see a light at the end of the tunnel and although it’s still a long ways a way, it’s sooner every day. 

PS...I know I owe some thank you cards for gifts and K's birthday...I promise, they are coming soon.