Day 13

Good news today.

Dad spent his first full night at home and K and I hung out.  Kennedy went to bed about 9:30 last night and got up for her midnight snack and playdate around 11:30.  We had a sleepless night as K was still on the I.V. fluids so I needed to take her to the bathroom 3 times between 1am and 5am (the time she woke up).  Included in that was her 2am snack time.

The steroid has really increased her appetite, she out eats me 2:1 and my day was filled with satiating her endless hunger.  She eats a full meal about every 2 hours. 

Aunt Julie came to hang out with us for the first part of the day.  The second half of the day was filled with eating and creating art projects.  I even convinced Kennedy to spend sometime in the playroom (she hates to leave her room).

Dr.  Manera gave us two bits of good news today.  First, Kennedy’s cytogenics results showed that the chromosome abnormality that caused her B-type ALL leukemia is associated with a more favorable outcome.  Second, her blood tested on day 8 showed an MRD less than 0.01 which is again associated with a more favorable outcome.  If the day 29 bone marrow test is less than 0.01, she will be considered low risk and her cure rate at 95%. 

Infectious disease doctors came in to talk to us about Kennedy’s staph infection.  The secondary draws both are negative and type of bacteria strain was identified. Her antibiotics have been changed.  Her stay will be until Friday or Saturday (at best case) and then we will need to give her the antibiotic through her port at home for an additional week. 

Tonight, Maddox and I hung out and wrote this blog.  I came home to a ton of packages…or as Maddox says, “Kennedy got lotsa presents”.  Thank you to all who have sent something and I apologize if we have not acknowledged all of the kindness.  We are so grateful for the prayers, emails, support and gifts for Kennedy and Maddox. 

I am especially thankful to Aunt Julie who flew in from AZ and has done everything - including taking Maddox to swim lessons and keeping him company, getting me out of the house for a quick workout, running out for thermometers and bringing Kennedy her favorite meals of the day.  We are sad she is going home tomorrow.

Day 12

Staph Infection

Last night, after I was snuggled in bed with Maddox and watching TV with Julie, Gene called.  The bacteria in the culture showed a staph infection.  Since the blood was drawn from the port, they needed to draw blood from a peripheral sight for another sample to find out if the infection was port-specific or in the blood. 

Poor Kennedy - mom promised no more pokeys.  Surprisingly, she was a sport about it but told me over the phone that if she got a pokey, so did mom.  I told her I would donate blood at the next opportunity.

Lying in bed did me no good because of course I began googling “Staph Infections Neutropenia”.  What came up was scary stuff like MRSA, needing the port removed and replaced….and more.   Since the type of staph infection wouldn’t be fully conclusive until 48  hours after the peripheral draw, the unknown had me shaking. I unwrapped Maddox's arms from my body, got dressed and went to the hospital.

When I got there around 11:30pm, Kennedy was chipper and wanted to play.  Mom and K colored our Fancy Nancy coloring book while Gene passed out next to us.  The nurses started heavy-duty antibiotics including Vancomycin.

Kennedy woke us up at 5am, happy as can be and STARVING.  Per dad, her appetite didn’t let up all day.  Dad also said she received another bag of platelets today.

I went to work in the morning while dad and Kennedy played (and ate) the day away.  Aunt Julie came by with noodles and broccoli and Kennedy was thrilled.  She ate a ton of cereal, noodles, broccoli, edamame, chicken nuggets….and the list goes on and on. 

By the time I arrived at 6pm, Kennedy’s belly was HUGE.  For some reason, she couldn’t get a full sensation and just kept eating.  The semi-hard distended belly worried the doctors so an X-ray was ordered of her abdomen.  I am still waiting for those results.

After skyping with Maddox (who made us all laugh), Dad left to go home for the night and hang out with his favorite little man.  Apparently Kennedy kept Gene busy with art projects, a trip to the playroom and never-ending food demands.  Poor dad looked exhausted – his new 4-year-old boss is a slave driver.

Kennedy and mom spent the rest of the evening playing with playdoh and other great gifts from colleagues at work (THANK YOU!!!).  After her exhausting day with dad, Kennedy crashed at 9:30 after I rejected her demand for more noodles. 

As of 11pm, both blood draws from last night are not showing any staph growth but we still have 24 hours to go – YAY antibiotics!!!  Crossing our fingers K will get to home by Wednesday.  

Day 11

Uneventful…thankfully.

Kennedy and mom spent the day lying around the hospital room.  Doc come to visit and said no bacteria growth yet on the culture but we still had 48 full hours to pass to know for sure.

K broke another fever around noon but after some Tylenol, I saw the first glimpse of Kennedy in days.  She was playful and happy.  She even walked down to the playroom; unfortunately it was closed.

We decided to play beauty shop so I finally got a comb through her hair that started to dread.  She was a great sport because her hair resembled a birds nest with a ton of knots and she didn’t comlain.

Today Kenendy’s appetite was like none-other.  She downed 4 bowls of Cheerios, noodles, popcorn, bread with cream cheese and Cheetos.  Cousin Nicole fulfilled her craving for noodles and Cheetos which put a bit smile on her face.

Dad spent the day with Maddox at his wrestling meet and came back around 2ish and crawled in bed with K.  We all napped, kind of.

Tonight I went home and dad stayed.  It was so hard to leave.  It hurt to think I wouldn’t see her all night. 

I’m attempting to go to work tomorrow so Gene and I can start trading work days.  So far, the plan is still in tact.  I will get up early, drop off edamame, string cheese and McDonald’s hash browns (per K’s request) at the hospital before work and head straight back there afterwards so Gene can go home. 

Taking life day by day.

Day 10

Back in the hospital. 

The morning went OK.  K slept with daddy. Mommy (who now has a cold) slept alone and got the first full night’s sleep in 9 days.  I convinced Kennedy to come downstairs for breakfast and daddy made her a big Mickey Mouse M & M pancake.   She had 3 bowls of Cheerios and pancakes and was a GREAT sport about meds.

Maddox came home from Grandmas and definitely brought happiness into the house.  He was so sweet to his sister and they spent some time playing with Kennedy’s new toys on the couch.  Aunt Julie spent sometime reading a “my sibling has cancer” book last night and I think he it is starting to sink in.  Maddox has a runny nose like mom so we both donned some fancy yellow masks all day.

Kennedy was pretty miserable after Maddox stopped entertaining.  K and mom took a nap from about 1-3 and Kennedy woke up with some tummy pain, which subsided after a nice belly rub.  Daddy was out buying a new thermometer and baby monitor but when he came home, K and daddy went for a nap too.  Maddox went to his buddy Alek’s house to play.

Mom and Aunt Julie went to the gym, which was nice because I needed to sweat out this cold and burn off some stress.  By the time I rented some movies for K and picked up dinner, K was in bad shape.  She was confusing grandma for mom.  Dad took her temperature and she was at 100.3 – almost worthy of a call to doc.

We tried to get her to take a quick bath or shower since she hasn’t been able to do either since the port was accessed.  We ran the shower and she was having a fit so we tried a bath instead.  She was so confused and thought areas of the bath were hot, then cold then she thought the water was draining when it wasn’t.  She was screaming and crying and barely making sense.  Her skin and senses are so sensitive, it is painful to watch her.

We gave up on the bath and put her back in bed and then the thermometer drama began.  Three different thermometers, three different readings - 101.1, 98 and 99 degrees.  The new one read 100.7, 100.6 and then it went down again.  Finally, Auntie Julie went out and bought a good old fashion thermometer that read 100.6. 

We paged the doc and were readmitted.  We arrived at Loyola at 9:30 at night.  Normally, they would need to draw blood from the port and from a clean site (which means being poked, again).  I think that since we had thermometer drama that the doctor knew about and her temperature was 99.7 at admittance, he ordered the port draw and will then decide if a clean site is necessary based on how it comes back.  Whew – we avoided “pokey”, at least for now.  Now we wait.

Day 9

Another long day.  We were up a lot last night, including a short play period at 4:30am so we were all tired.  We woke up K a half hour before we needed to leave for our appointment, around 8am.  Kennedy didn’t want to take her medicine and we successfully forced one teaspoon of chocolate ice cream filled with her steroid.

When we got to the outpatient center, they had to re-access Kennedy’s port and she did surprisingly well.  They started by taking blood and noted that her platelets were low again and would need another transfusion.  This meant we would be at the center for a good portion of the day.

The sucky part was that Kennedy was not allowed any food or drink all day, with the exception of her medicine in the morning.  She was starved and let us know how she felt. 

They did the spinal tap and infusion around 11:30.  Gene got weak on his feet when K unexpectedly jerked while the doctor was working.  What a scary procedure but thankfully all went well.  It took a half hour for K to recover.  We learned that we would likely be doing more spinal infusions in week to come.

While Kennedy was recovering from the anesthesia, Gene ran to the store to get Kennedy food so she could finally eat.  She was starved and daddy was a hero.

Post spinal they gave Kennedy her vincristine chemo and transfusion of platelets.  We finally left around 3pm.

Kennedy slept when we got home for a few hours.  Auntie Julie flew in from Arizona to help and did a great job keeping Maddox busy.  Unfortunately, Kennedy was not feeling well enough to visit with her auntie.  Auntie Julie took Maddox to grandmas house for the night and Kennedy stayed in our bed for the rest of the evening.  We even brought her dinner in bed – her favorite, edamame and miso soup.

The hardest part of these first few months will likely be the fact that Kennedy is Neutropenic. This means she has barely any white blood cells so does not have the ability to fight off infection.  We don’t want to keep her isolated but it seems that when family comes to visit, they want to kiss her and pet her like a puppy.  I’m sure we’ll figure it out so she is happy but safe.

The neighborhood kids sent some great cards over today to brighten Kennedy’s spirit. She also got a video from an out of town friend.  I don’t think Kennedy understands what all the fuss is about but we appreciate all the well wishes.  

Day 8

We went home today.  We weren’t quite sure that would happen because Kennedy’s sugar was at 190.  It was quite the wake-up call for her.  They had to prick her finger and I didn’t have the heart to wake her up and tell her “pokey” so I let them do it while she was asleep.  I crept out of the room and claimed I had no idea they were going to do that since I promised there would be no more needles after the port was put in.  Thankfully, it wasn’t that traumatic but she was NOT happy.

Thankfully they let us go anyway but we need to watch her sugar intake.  It’s not the food but the steroid that is causing the increase in her sugar level but food can make it worse.

Driving her home felt like bringing home a newborn.  Scared to drive, not sure what to do when you get home and nervous about everything. Gala, our nanny sterilized her room and washed down everything but of course, that is not where she stayed.

 

Kennedy relaxed in our room with me while Gene went to run around and get all the food and prescriptions she needed.  Because we have been out of the real world for so long, it took a couple of trips to the store by both of us to finally get it right.

K slept most of the afternoon, catching up from her hospital stay.  She had no appetite for lunch but then perked up in the evening.  Her favorite is edamame and miso soup, at least today.  Grandma, Grandpa and Uncle came to visit Kennedy and Christina dropped off a little coloring set for her along with more anti-bacterial gels and washes for me. 

While the house was semi-full, I took Maddox for a play date at his buddy Jake’s house around 4 and picked him at 5.  I can tell this is bothering him as he is way more hyper and intense than normal – or maybe I am just sleep deprived and not used to his silly ways. 

Maddox had a Rec function at school tonight from 7 – 8 that Gene was supposed to take him to, that is until Maddox decided he no longer wanted to go with all the grandparents at the house.  Luckily I convinced him to go and I went with.  It is odd being in the real world, it feels overwhelming.  It’s not like I didn’t know that life didn’t stop for everyone else just because it did for me but it’s weird to see everyone so normal when my world is upside down.  Tonight I did not do a good job of being playful with Maddox at the event but he didn’t seem to mind, he was being his normal social self and barely noticed I was there.

  

Coming home was a bit overwhelming too.  Medicine time was half way done when I arrived – it’s a bit scary with so many to administer but she did great.  Uncle Sergey brought us dinner and grandma helped Maddox study for his spelling test which was so nice. Then the family left.  

Day 7

Last night I explained to Kennedy how cancer and chemo works in kid terms.  I told her that cancer is an army of bad guys hanging out in her blood.  The chemo/meds are the good guys coming to fight and kill the bad cancer guys.  When she feels sick somewhere, that is where the battle is taking place.  When I was done and asked her if she understood, she said, "don't worry mommy, the good guys winned".

Mostly an uneventful day – which is a good thing. Kennedy was bit more tired and definitely not feeling like herself.  Unfortunately for K, we did not go home.  She received another platelet transfusion in the morning and also needed more blood in the evening.

The good news is that we get to go home tomorrow morning when we all wake up.  

K was a trooper about taking her meds today.  Because of the two transfusions, she needed to add Tylenol and Benadryl orally in the morning and evening to her endless meds and she did great.

We did some arts and crafts during the day and some pets came to visit around 3pm.  It cheered her up.

She is a little scared about the IV in the central line/port being removed tomorrow.  I’m scared about them putting it back in on Friday when she comes for her next round of chemo. 

The plan is to be home all day tomorrow.  No food or drink after 11:50pm, give her the steroid Friday morning and return to Loyola.  Before we leave, we need to apply a lidocain type drug to skin over the port and cover it with saran wrap so it will be numb by the time they need to access it.

As far as chemo, she will receive some under twilight anesthesia as a spinal and the rest will be administered through the port.

Kennedy is part of a clinical trial conducted by Cure Search http://www.curesearch.org/ArticleView2.aspx?id=8917 .  What this means is that her treatment is being based on her exact needs and test results.  Instead of being issued a standard treatment based on the order of one doctor, she will receive doses of chemotherapy based on her test results from a blood sample taken this Friday and bone marrow drawn on day 29.  Post-induction treatment will be based on a protocol determined by a board of 6,500 members from all over the world.  Our hopes are for her to place as low or standard risk, meaning her treatment will be less aggressive.  

I can tell Kennedy is worried about her hair and her upcoming isolation because she keeps bringing it up.  She thinks that her friends will be afraid of her when she has no hair because she is afraid of the bald kids in the pictures on other's blogs.  I'm thinking by meeting the kids like her in clinic on Friday, she'll get a better understanding that kids are kids, with or without hair.