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!

Day 87

Kennedy modeling Kora's hair.

There is a different set of rules when your child has cancer in regards to discipline.  It is very hard to not let them get away with everything and anything.  Also, the self-soothing technique we as parents spend months helping them learn when they are infants is also out the window.  With all the craziness Kennedy experiences, we never want her to feel sad or inconvenienced, we want to make it all better and in the process, she has forgotten how to self-soothe aka – put herself to sleep.  This may not seem so bad; you may figure we can lay with her until she falls asleep but unfortunately she is up 2-3 times during the night and have start the process over.  I think I got more sleep when she was an infant than I have in the last 80 days. 

Last week, I put my foot down.  She needed to learn how to put herself to sleep again and the incentive was a visit to American Girl on her birthday in addition to her birthday party.  The deal was that we would put her to bed at night but in the middle of the night when she gets up to go to the bathroom, she would have to go back to sleep on her own.  She would need to sleep through the night for 3 consecutive nights without making us sleep with her or ending up in our room.  Well, some nights she did good, others not so much.  To throw a curve ball, add in her hospital stay and itchy rashes and we have to start from the beginning.  When she is sick, she can sleep in our room.

Kennedy's fashion show

Last night, was the night of all nights.  We have 4 nights until her birthday and it counted as the first of 3 consecutive nights.  She wouldn’t go to sleep on her own so she agreed that if I listened to her meditation tape with her, she would not wake us up in the middle of the night.  I agreed.  At 3:30 am, we got a tap, tap, tap on the door followed by  “I can’t to sleep by myself”. I said fine, bring your pillow and blanket in our room but remember, this means no American Girl Doll.  She decided to go back into her room after a quick potty break. 10 minutes later, another tap, tap, tap – “mom, I peed in my bed”.  Well, that wasn’t possible, I just heard her go pee.  I said “Kennedy, go back to bed”.  She said, “mom, really, I peed in my bed”.  I got out of my bed and felt her pajama bottoms and she was soaked.  I then went to her bed that was also soaked….and cold.  Turns out she poured a cup of water on herself and bed to get me to come in and change her sheets and put her back to bed.  I had to pretend I was mad but it was pretty darn funny and VERY witty.  There comes the problem again of how to discipline a bald little cutie with cancer.

Enough about my lack of sleep and Kennedy’s antics.  The rest of the weekend went well.  Kennedy got released from the big house (hospital) by 2pm on Saturday, the shortest stay yet.  She got to see grandma and put on a fashion show for us.  Sunday uncle Sergey came over and hung out with dad and played outside with the kids.  Dad took the kids to shoot some balls later at the golf range but it started to rain.    

Hanging out with Grandma and Jaxon

Today K had some mouth sores and has been nauseas.  Hopefully all will subside by her birthday on Thursday.