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.

Day 111 & 112

Pre-k end of year picnic

Thursday morning we had clinic at 8:15 am and it was also the first day of the steroid pulse.  All was going well, we got up early, gave K her meds and almost made it to clinic on time.  We were stuck in a bit of traffic and about 5 minutes away, K threw up from the steroid in the car.  Thankfully she kept it down long enough (40 minutes) that we didn’t have to give it to her again.  I went in to clinic with K and dad went to go clean his car.  K’s counts were good (790) so they gave her the Vincristine.  Kennedy didn’t even flinch when they accessed her port.

Post clinic K had a playdate with Emily and then went to her farewell preschool picnic at night.

Holding Daddy's hand while he
gets a pokey

Today we hosted our first blood drive and it went great.  K went to work with me in the morning and finally got to see dad get his pokey.  Friends and family from all over came which was a humbling experience.  People who swore they would never get a pokey did anyway for K.  All together, 54 pints of blood were collected between 11am – 6pm.  Next blood drive is on Friday, June 15 from 11am - 6pm.

I got home from Vegas late on Wednesday night and am happy to be home.  I had a tough time being “on” in Vegas.  The convention is a big networking event and I could barely function, I just wasn’t mentally there but it was still nice to get a break.  Dad did great when I was gone, working with both kids on homework and getting them to bed on time. 

Overall this week has been good.  We may try and take K on the boat this weekend depending on how she feels.  We’ll see how it goes – right now it seems a bit overwhelming.

Blood Drive Info.

So as I'm getting ready to leave for a few days, I remembered that I never posted the blood drive information for Kennedy. The first one is this Friday at Harlem Irving Plaza (May 25) from 11am - 6pm. There is another one on June 15 from 11am - 6pm also at the HIP. To sign up online, visit www.redcrossblood.org (use coded 0406248) and if the code doesn't work, use zip code 60067. You can also email Christina to set up an appointment at HIPchic@harlemirving.com.

Day 105

Kennedy with Effie (child life volunteer)

Today I feel depressed as I walk into my empty house.  I left Kennedy at the hospital with dad at 7pm and Maddox is at Grandma’s.  It’s been a tough day at the hospital and it’s hard to be alone.  Kennedy did well; she’s been a bit nauseated but overall handled the intense chemo okay.   Two other kids were admitted at the same time as us and they have a much tougher battle a head.  There is one 12 year old little boy with AML leukemia in for a fever (diagnosed 6-weeks ago) and another little girl who is just 11 years old with osteosarcoma, diagnosed only a week ago.  Today made me realize how lucky we are that Kennedy was diagnosed with ALL Leukemia – is it even possible to say we are lucky when cancer is involved?  Never would I want to be in the shoes of the parents that were there today.   AML or Osteosarcoma cancers don’t have such favorable odds and these little kids are in for the fight of their lives.  I’m emotionally drained because I know what these parents feel and I’m scared for them. 

Tonight I am packing for a work trip to Vegas.  Part of me is nervous about leaving and another part of me can’t wait to sleep.  Is that even possible – sleeping in Vegas?  I was excited to leave a week ago and now I just have a huge pit in my stomach and choose to blog instead of pack, it makes leaving less real.   Maybe if I actually sleep tonight, I’ll have energy to pack tomorrow.

Kennedy playing Wii

Kennedy and I had a great day today.  We spent most of the day in the playroom and ended our time together hanging out in the movie room with Kennedy and I trying to figure out a Wii game.  Dad brought dinner later and the three of us had a date night watching the Muppets. 

We talked to the doctors about Kennedy’s upcoming steroid/vincristine mix and she will be getting a script for morphine just in case the bone pain makes its presence.  I can’t imagine going through what we went through 8 weeks ago without something to ease the pain.  Hopefully if we have the med, we won’t need it.  Things seem to affect her differently all the time. 

I’m leaving for my trip on Sunday, will be back on Wednesday, and won’t have a chance to blog until Thursday - the day she starts her steroid.  Praying for an uneventful few days and no reaction to the week-long steroid/chemo mixture.

Days 101 - 104

Back at Loyola for Kennedy’s 4th admit, only 2 more stays to go during the intensification period of treatment.  By August we will be on maintenance, meaning no more overnight stays for chemo.  Soon we will only have chemo once - twice per month, then once per month…eventually we will be done with cancer for good.  Only 808 more days until “eventually”.

Kennedy’s main doctor returned today and saw her for the first time in 6-weeks.  He was very pleased with her reaction to treatment.  He loved the way she looked, her counts and even the hair that started to return to her cute little head.  Dr. Manera is the strict doc. As overprotective as he is about her being in public spaces, he approved her going back to a dance or gymnastics class with heavy use of sanitizer.  This is huge since this is the doctor that said “No Movie Theaters – Even if They Are Empty!”  Amazingly, we also got a pass to go swimming BUT only in a private, heavily chlorinated pools that have not had kids pee in them.  Finding a pee-free pool might be a challenge. 

Kennedy had her spinal injection of chemo in the morning and sported a sleeping mask.  It worked pretty good because dad said she didn’t wake up as easily after the Ketamine this time.  When I got to the hospital at 6’ish she was taking another nap.  Of course this means we will be having a late night play date.

This week was busy for Kennedy. Molly came over on Monday to work with K; Kaitlyn started giving piano lessons on Tuesday and Cousin Aileen and Aunt Joanne came by on Wednesday. 

Since Kennedy and I are roomies tonight, she also wants to blog, this is from the princess:

I slept long when I got the pokey in my back with Kelly (her AG Doll).  And I’m with my mom at the hospital.  I wanted to stay up till 1 in the morning but I am pretty tired.  And I made an American Girl Doll project.  Dr. Manera came from vacation.  Dad was with me for my pokey.

Days 94 - 100

Not much to report. Kennedy is living the life of a normal 5 year old.  She’s been busy with her clinic visits, play dates and just being an active 5 year old.  We are enjoying every second of normalcy because we know she has an admit this Thursday followed by an awful steroid pulse with Vincristine the week after.  It’s hard to blog while keeping up with her; she has had more energy than all of us lately.  Add that to work, Maddox’s baseball schedule, my insane workout schedule and it makes me a very bad blogger so I apologize for not keeping anyone up-to-date.

This week consisted of clinic, build-a-bear, Rainforest Café (all the normal post clinic fun), a trip back to her old pre-school, a movie, a play date with her BFF Sofia, Maddox's baseball games, some parties and a salon visit.  It’s always a delicate balance of how much she can do versus how much we should let her do.  So long as she is up for things, we hardly say no.  We just chase her around with sanitizer or mask her and the options are limitless.  She even spent time jumping on a trampoline this weekend which shocks the docs in that she hasn’t experienced “foot drop” from the Vincristine.

This week at the park, Kennedy was asked why she was bald, she said “because I have cancer”.  She was very matter of fact and went right on playing, didn’t bother her a bit.  She was later asked when visiting her old preschool why she was wearing a mask and said the same thing with an added “and I don’t want to end up back in the hospital”.   She could break down and cry that she’s different, that she’s bald, that she has to wear a mask or that her mother chases kids around with sanitizer but she doesn’t. Her strength is my strength; she’s a cool kid.  I love weeks like this.

Day 93

Today is the 10% mark.  We are 10% finished with our battle against cancer.  It is a good day and it’s been a great week.  Kennedy celebrated her 5^th birthday at American Girl Doll Place on Thursday with Dad and me.  Then we celebrated again that night at Rainforest Café with Grandma, Grandpa and Sergey.  Friday we stayed around the house and recovered from our hectic day.  Kennedy did get sick in the morning on Friday after taking her meds, not sure why she threw up but she quickly recovered and we had a pizza party picnic in my room with Maddox who was also off school. 

Saturday we went to Maddox’s baseball game but because it was so chilly, Kennedy and I retreated to the car for a 1.5 hour nap.  Later we celebrated Cinco de Mayo at Marcy and Gene’s house with our fabulous neighbors.  Kennedy did great and wore a mask the whole time.  Thankfully none of the kids seemed to mind me chasing them with hand sanitizer.

Today we celebrated Kennedy’s birthday with her girlfriends at My Party Princess.  It took her a 

while to get into it but by the end she was giggling and happy.  We put princess gloves on her so she could partake in the handholding activities.  This was probably the smallest birthday party she’s had but it was perfect.  Not too many girls was less stressful on mom and healthier for K.  She had a wonderful time.

It’s been nice to see her happy and acting like a normal healthy 5 year old.  

 

Day 89

I surrender, Kennedy wins.  Despite trying to keep her in her room at night, I lose.  She won’t sleep through the night and I refuse to take away the American Doll experience. I’m sure I’ve broken every parenting rule of “don’t threaten unless you plan on following through” but this kid has been through so much, what’s a few years of no sleep?  And, I’m lucky she is turning 5, things could have been a lot worse and darn it, we are going to make this birthday phenomenal.  Our new deal is she has to go to sleep in her room but if she wakes up in the middle of the night, she is welcome to grab her sleeping bag and spend the rest of the night in our room.  Key word is “quietly”.  I’m hoping she will be so uncomfortable sleeping on the floor that she will want to move back in to her room.  So far, this rationale is not working but I will keep trying.

 

We are looking forward to tomorrow, it’s Kennedy’s 5^th birthday.  Maddox has a play date during the day and Gene and I are taking Kennedy to American Girl to celebrate.  Kennedy’s new curly haired doll will be waiting for her in the hot-seat at the café.  We have lunch at 12:30 followed by a meeting with a personal shopper so we can dress her doll and get its ears pierced.  Maddox has his first baseball game at night.  Grandma, Grandpa and Uncle Sergey are coming to the game and after we will continue the celebration at Rain Forest Café.  It’s nice to have something to look forward to.  Kennedy is 5, that is a huge win!