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.

Day 84

I just left my two favorite baldies and went home.  Today was a nice day even though it was spent in the hospital.  Kennedy finally went to sleep around 1’ish last night and I couldn’t fall asleep until around 2:30 (and of course I was up at 6).  Taking into account the potty breaks every hour or so from the chemo and fluids, I think I slept 2 hours.  Sleeping beauty woke up at 10:30 full of energy and with my lack of sleep it was hard to keep up! 

Kennedy made me a mother’s day  t-shirt in the playroom, played kitchen and built with lego blocks for most of the day.  When she was done with that, we went in the teen lounge, where she had some popcorn and watched the Muppets.  I think I passed out half way through the movie.  When we were done with that, we went back to her room and did some school work and hung out until dad came with her strawberry milkshake.  She didn’t eat much today and we were hoping she would drink the shake but she only had a few sips.  Dad brought dinner for us too and since Kennedy didn’t like the smell, we pulled out some chairs and her tray table and dined in the hallway.  We had a semi-date night of 15 minutes or so in the corridor of the hospital (thankfully we were at the end of the hall). 

Maddox is at Grandmas tonight and I was a bit worried about coming home to an empty house but am actually enjoying the silence.  I’m looking forward to catching up on some much needed sleep.  Tomorrow Maddox has baseball practice and a birthday party so we’ll have some time to hang out in between.  Hopefully when he’s done with both, K will be ready to come home and we can meet dad to pick her up.

Sweet Dreams!

Day 83

Kennedy’s Blog - I asked her to write tonight so I typed as she spoke. From the mouth of a princess at 12:35AM:

After her antihistamine - Miss. Hyper
walking the halls all night.

K made her own butterfly wings.

“I had a pokey in my back. I saw four eyes and went back to sleep and woke up and there was two eyes.  And I went to the hospital and we went to the room and we changed the room to a different room.  And the other one we went was so fresh that I liked the smell.  Mommy came at night.  Daddy was in the morning and mommy was night.  I had ice cream, I had vanilla that was melted and I had chocolate that was not melted but I ate it so fast that I needed to go to the bathroom.  At my birthday we are going to get an American Girl Doll and have lunch with her.  And I’m going to bring her home and she’s gonna have her ears pierced when she’s at that place and have her hair done and then we go get her dressed up with a beautiful outfit.  She’s gonna look so beautiful with that stuff and mask on her eyes and she’s gonna look beautiful with her earrings.  And for my birthday I’m going to do a princess party and wear a crown and wear my own dress and wear my own make-up and mommy will do my nails on my toes and the princess party will do my nails and put glitter on me.  I’m going to take nauseas medicine and do a flush before I go to sleep – uh oh, I have to go pee. The end."

Day 82

This week has been hard.  I’m tired of pretending I’m strong and everything will be okay because this week, even I’m not buying my positive BS.  I’m tired of telling other people that “it’s okay, we’ll fight it – there is a high survival rate for ALL leukemia”.  After this hellish week, I’m more afraid of what the meds or infection may do to her than cancer.  People should be comforting me, not me them but when they try, I feel uncomfortable and wind up comforting them instead.  And then, the people that want to listen, I don’t want to talk to but complete strangers that say “I’ve heard”, I want to break down and start sobbing – for example, the guy that was helping me buy a DVD player at Best Buy today.  Thankfully I pulled it together before anything came out.

Enough about me, let’s talk about the itchy red rash that bombarded us on Monday.  Needless to say, I didn’t sleep all night on Monday, worrying if her throat would close up.  I watched the clock intently for each 4-hours to pass so we could administer Benadryl.  Gene slept a few hours but barely enough. 

I woke up Tuesday morning sick as a dog so Gene took the day off of work to take Kennedy to clinic at 9am.  I wanted to go but the risk of getting her sick was to high so Gene told me to stay home; I didn’t get out of bed all day.  Gene called me when the doc entered the room.   Dr. Sarvita, thought the rash was from meds but couldn’t say for sure it was Bactrim.   I disagreed – Dr. Edan had been spending her sleepless hours looking up the side effects from each of the meds K has taken in the last month and Bactrim was definitely the culprit.  She then went on to say we could try  Bactrim again in 2-weeks to know for sure….really?  Hell no.  There is no way Kennedy will be getting a Sulfa based med in quite some time.  Also, her birthday party is the weekend she would try again and the last place I want to spend that day is in the hospital with a restricted airway and a red itchy rash.  The allergic reactions to Sulfa can be so severe and I consider us lucky that we just had a rash.  Stevens-Johnson syndrome can also occur from Bactrim and I am not willing to take that gamble to “see”.   The doc will be prescribing a new med in place of Bactrim which is more of a second line of defense against PCP pneumonia and not as effective as Bactrim.  The bad thing about the new drug is that they will continually need to check her liver enzymes as the meds tend to cause liver issues.  Do we have any other options???

Dr. Sarvita suggested a few days of prednisone steroid and a heavier antihistamine but she wanted Kennedy to first see a dermatologist.  She made an appointment for Kennedy at a derm doctor in LaGrange for 11:30.  Between appointments, Gene took K out for pancakes and right as they got their food, Kennedy’s rash started to make its appearance known.  She hadn’t gotten Benadryl all morning and the rash had found its way all over her body and face and she was just miserable.  She didn’t eat. 

The dermatologist, who also brought in more doctors, thought the rash was likely caused by Bactrim and thankfully did not suggest a steroid – saying the steroid would only temporarily make the rash disappear, only to return again in a few days even worse.  They prescribed 2 antihistamines and Zantac.  This has thankfully been doing the job and there has been no rash today.

 

Tomorrow is clinic where she gets her spinal chemo infusion and is then admitted for a 24-hour methotrexate drip.   We made her a “no pokeys” nightgown since she already grew out of her favorite shirt.  We also let the kids stay up for a late snack together since they won’t see each other for a couple of days.   

I feel sick thinking about all of the chemicals they are pumping into her little body and what the next reaction may be.  No one prepares parents for having a sick child and what that means; the toll it takes on the family, the siblings and the sick child.  Today I can’t hold it together and I can’t be strong and I wish I could be okay with that. I’m just tired and scared, maybe tomorrow will be better.