Day 31

K sleeping off the pukeys

It’s funny how when Kennedy is giggling and acting normal, we forget how sick she is and that cancer has invaded our home.  Today we have been reminded.

We never made it to Build-a-Bear yesterday since she was so exhausted.  Instead, Mom, Dad and Kennedy took a nap while Maddox played at Riley’s house (thanks Kim!).  At night, she ate super light and passed out early.  She was super fatigued and not herself.

This morning K woke up with severe leg pain. Since she didn’t have a fever, we gave her some Tylenol and the pain subsided.  She ate breakfast and went back to bed.  Maddox and I went to the Y for our classes and stopped at the store on the way home to pick up some “K” essentials.  When we got home, Gene was dealing with pukeys.  K had thrown-up all over our bed.  She threw up so much, it went right through our mattress. She was feeling awful.

Gene put her in her bed and brought her some gingerale.  I tried giving her Zofran (for nausea) but that all came back up within 15 minutes.  She finally got a little rice down and we spent a half hour reading her Cinderella.  Dad and I took turns staying with her.  At one point she watched a bit of a movie and colored. Eventually K and dad took a nap and I fell asleep in Maddox’s room. 

Thankfully, in the midst of all of this, Jane picked up Maddox for a play date/sleepover with Alek (thanks Jane!).  I asked her to come early so we could focus on K without him feeling left out.  He left at 12:30 this afternoon and we miss him already.

Now we wait.  We wait for her to feel better.  We wait for her test results and we wait to learn about her new protocol.  793 days to go. 

Day 29 & 30

Yesterday was great.  We made cupcakes, jello jigglers and cookies.  K received a ton of baking supplies 2-days ago (in addition to my Target run) so baking was the theme of the day.  We took a nap around 12 and returned to cooking.  She was exhausted all day and also went to bed at 7pm.  I was worried her exhaustion meant her blood counts were low and that she might need a transfusion again.

Last night I spent a few hours at a neighbors house after K went to bed.  Usually I am overwhelmed with a group of people around but not last night.  It was nice to get out and it was the first time I let down my guard.  It was nice to laugh.

Today was the day they tested her bone marrow for percentage of blasts (cancer cells) and it was also the day she couldn’t eat all morning.  She actually woke up at 2am super thirsty and I cheated by giving her a big gulp of water.  We got up, gave her the dex (steroid) with a swish of water and then that was it until after the procedure. 

K and dad waiting for the procedure.
Grumpy face says "I'm hungry"

Post procedure "I feel weird"

The procedure was scheduled for 10 am and thankfully she didn’t need blood or platelets but they still didn’t start until 11.  She was not a happy camper and was miserable about food.  Thankfully all went well. 

It’s hard to sit and rub her head knowing needles are going into her back.  Since her eyes are open while she is under the twilight anesthesia, I couldn’t cry but wanted to.  I didn't want K to see me cry, even though she was “under”.  Dad got the procedure view, luckily I was by her head and didn’t see a thing.

Now we wait.  We should know on Tuesday her risk level.  Doc will let us know on Wednesday the next course of treatment.  Thursday is another spinal.

We came home and took a nap.  The plan is to head to Buld-a-Bear this evening.  Her blood counts were awesome so we can take a trip to the mall.  We still can’t take her to the movies (per the doc) but wide-open spaces are OK.  Still trying to figure out this rationale but I’ll venture out.  

Maddox has a nice busy weekend planned.  He has a play date this evening, swimming tomorrow morning, followed by a sleepover and yet another playdate on Sunday.  Lucky kid.

Day 28

Today went well. Gene and I both went to work and K stayed home with Gala.  I got a total of two calls from home.  The first one was from Gala to see if she could paint Kennedy’s face with the face paints someone got her to decorate her soon-to-be-bald head (K was begging).  I said “yes” of course, is there any other answer?  The second was a call from Kennedy to tell me Maddox called her “stupid”.  I guess this was another good day. 

I also had great luck today with the American Red Cross for a blood drive (LifeSource is still ignoring me).  Someone at Loyola passed my information along to their Red Cross contact and the woman called me back, super excited about our blood drive proposition.   We meet next week so I will keep everyone posted on the dates (if you want to donate).

I took my lunch at Target today and bought a bunch of spring treat accessories (molds, cookie cutters, etc) for my date with K tomorrow.  I also got finger paints and large sheets of paper – tomorrow will be messy!

It feels good to blog about nothing important.  It means K is feeling well and my emotions are under control.  One more full day until clinic.

(Wrote this yesterday but was too tired to log on and post)

Day 27

 Not sure WHAT is wrong with my emotions but today I’m definitely more angry or feisty than scared.  Guess this roller coaster ride is just getting started.  Everything frustrates me or makes me tear up.

Making pizza with dad

Of the many instances of things that got me going today, the one that really makes my blood boil is an attempt to host a blood drive at the HIP.  Kennedy received about 4-5 blood/platelet transfusions her first three weeks of treatment.  Having the HIP as a huge resource and knowing how important blood is in saving lives, our marketing department decided to open the HIP up for a blood drive. Christina (my wonderful, sweet colleague) even came up with some perks for those that would donate and then reached out to Life Source to try and set one up.  When she got the return call, she was met with resistance and negativity.  All the excuses in the world….”we need 30 pints of blood and last time we did one, we only got 10 (that was 7 frickin years ago)…it costs $7k for us to come out and that’s too much money if we don’t collect enough blood…you don’t have a large enough area…and on and on she went”.  Really?  We have daily foot traffic of 50k, 30 pints is not a problem, especially if we market it.  Who would think it would be so hard to host a blood drive?  Needless to say, this is now my mission and I’m irritated.

Kennedy and her makeup

On to Kennedy.  K spent the day with daddy who hosted a pizza-baking event.  I came home from work to a wonderful array of pizzas made by Mr. Maddox and Miss. Kennedy.  Dad also gave K a long bath, which she loves.

I did day two of learning to read and dad spent time reading and doing homework with Maddox.  Kennedy is still out eating the family 3:1.  Two more full days of steroids to go.

Thank you to all who have sent gifts, clothes, make-up and cards – it is all appreciated and the kids are having a good time playing.  We came home to more packages and lovely cards - thank you so much for thinking of us and praying!!!

Day 26

K and Sofia celebrating by making cakes

Today was a hard day for me.  Gene and I both went to work and K stayed with Gala (our nanny).  I felt like a crying machine, anything and everything set me off.  Thankfully I hid in my office all day so no one saw what a mess I was.

Staying positive is a must at home but suddenly I’m scared.  I’m scared that she’ll get a bacterial infection.  I’m scared that the chemo could cause damage to her heart or brain.  I’m scared that I’ll be working 4-days a week and miss her like crazy.  I’m scared I’ll regret going to work instead of spending every second with her.  I’m scared that after 2 years and 3 months, this wicked disease could come back.  I’m scared that if it did come back, the next course of treatment is most successful with a bone marrow donation from a sibling.  Only 30% of sibling bone marrow is a match and what if Maddox wouldn’t be a match?  I’m scared because they say of the 90% that are “cured”, 25% - 40% go on to lead a long healthy life.  Well, what about the other 60 – 75%? I know, “what if, what if, what if”.  A lot of “what ifs” can change anyone’s world but most have not been faced with such scary statistics.  This pit in my gut just won’t go away today.  I know I must sound crazy but I’m so damn scared.

Bath time goofiness

Coming home reminds me of how much she has changed.  She doesn’t look the same anymore.  Her face is swollen, her tummy looks pregnant and her hair is half gone.  It doesn’t matter, I lover her the same, if not more now than ever.  It’s nice that Kennedy is still Kennedy despite her new drug-induced appearance.  She’s a little more introverted, but still her sweet self.  I just hope this damn treatment doesn’t hurt her soul because it’s killing mine.

After work, K had her girlfriend Sofia over.   She really shouldn’t be having guests over but she NEEDS it.  She needs to be a kid.  Kennedy missed Sofia’s birthday party on Saturday but got to celebrate her real birthday today at our private party.  The girls made bracelets, cakes, brownies and shrinky-dinks.

Maddox the banker

After Sofia left, I gave Kennedy her first reading lesson.  A friend at work brought me a home-school book for reading and lesson one went great.  I will take turns with Molly and Gene teaching Kennedy how to read so she is ready for kindergarten.  I’m not sure if she’ll start on time but I want the education aspect of the class to be a breeze.  She’ll have a hard enough time with her shaky hands, shiny head and exhaustion. 

After our lesson I scrubbed my bathtub and gave K a nice 40-minute bath.  While she was having a great time in the bath, Maddox got his reading done and entertained both of us.  When he was done reading, he got dressed like dad and pretended to be a banker going to work. 

For feeling so down today, the day was actually a good one.  Kennedy was happy and giggly which made me feel a bit better.  I am now utterly exhausted after my full day of work and playtime.   I’m back to work tomorrow and dad will spend the day with K.  Off to bed, hopefully tomorrow I’ll be as cheery as K and a bit more positive.

Day 25

Met a fabulous family.

Kennedy putting on make-up for her visit with ella

This morning dad got up early to take Maddox to his wrestling meet.  (Maddox took 3^rd at regionals, yay Maddox).  Kennedy waked me up when she crawled into bed with me and held my hand - the best alarm ever, and said  “I’m hungry”. 4.5 more days of steroids, at least that is what we were told.  Induction ends on Friday and the regiment changes completely which includes a temporary reprieve from steroids.  Most of the time Kennedy replaces “I’m hungry” with “steroids” as they have become the known culprit of endless starvation.

K and I spent the morning organizing the toys in the basement and putting on make-up.  I think I would have gotten more done if I didn’t stop to feed the eating machine every half hour but I didn’t do too badly.  Around 1:30, we stopped the cleaning and met a wonderful little girl (not to mention her fabulous mom and sweet little brother). 

When Kennedy was diagnosed with Leukemia, the Child Life Specialist recommended reaching out to another family who was diagnosed with ALL just 1.5 years earlier.  With that introduction, we learned about the Build-A-Bear incentive for clinics (or pokeys) and also read a heart wrenching and inspirational blog that gave us our first glimpse into life with Leukemia.  Today we got to meet Ella.

Ella was diagnosed with Leukemia in August of 2010, 9 months before her 5^th birthday.  Ella is now in kindergarten and has a full head of beautiful red hair.  She is still undergoing chemo but is vibrant, strong and absolutely adorable.  Gene and I had so many questions for Ella’s mom, Kate. She answered every single one with complete openness.   It was such a breath of fresh air to talk with someone who knows what this is like, how scary it is and how badly we wish “we” could fix it.  It also didn’t hurt that Kate was a warm and friendly person.

 

Kate brought some supplies to decorate bandanas and the girls did a few projects.  Once the bandana dries, K will model it for mom to post.

Grandma came over and worked on the basement with me and Maddox went to Alek’s for the evening (thanks Jane). 

The count down begins for Friday’s clinic and the end of induction chemo.   A new chemo regimen will be introduced based on her risk level.  This Friday Kennedy will get a spinal chemo infusion and have her bone marrow tested to determine her risk level.  Please start praying for “under .01” which will make her low-risk.

Day 24

I like good days.  And when I say “good”, I’m not saying that we did anything outstanding.  A good day is when Kennedy isn’t nauseated, isn’t in pain and has enough energy to seem somewhat like her self.  Today was a good day.

Maddox and mom started the morning at the Y, Maddox at swim lessons and mom at a much needed/missed TRX class.   Kennedy hung out with dad for the hour and was waiting for another feeding when I got home.  We used to space out feedings with at least an hour in between but she can’t even last that long anymore.  The doctors seem ok with the compulsive eating and said that after next week, she may not have an appetite so enjoy the appetite.

My Aunt Joanne and cousins Alene and Nikki stopped by with what seemed like an entire toy store for both kids.  They were kind enough to wear masks so Kennedy wouldn’t have to.  When K had enough of all the excitement, she kindly said she needed to rest and they left.

K and mom took a nice 2 hour nap – I’m starting to really enjoy napping.  Although there is a ton of stuff I could be doing instead, Kennedy doesn’t like to be alone so that means I get to nap too.  Gene ran out to the store to buy shelving for all of the bears and art projects Kennedy is accumulating.  Now K and I have another project for next week – organization.  For anyone who knows me, they know I’m the care-free clutter queen but I’m going to give it a shot.  I hear that kids like to be able to find their toys too J

Jane stopped by to bring dinner for us tonight – thank you! 

K opening more stuff from when she was
in the hospital from her Pre-K teachers

On a side note, I know that a lot of our friends and family have asked why Loyola?  Why not Children’s Memorial, Mayo, St. Jude’s, Etc?  In the beginning we didn’t have time to ask or answer these questions because the treatment process needed to start right away due to the aggressive nature of ALL Leukemia.  We did know that our doctor and hospital was part of Curesearch, which meant her treatment was part of a protocol that involved 271 hospitals (including St. Judes, Mayo Clinic, Children’s Memorial and more).  What I recently learned is that we were lucky (blessed) to start with one of the nation’s best doctors in pediatric hematology/oncology. 

Dr. Richardito Manera, MD is our doctor.  He is a Pediatric Hematologist-Oncologist. Per US News Health and Castle Connolly's estimation, Dr. Manera is among the top 1% in the nation in his or specialty.

There are 333 top pediatric hematologist-oncologists on the list of U.S. News Top Doctors. The physicians were selected based on a peer nomination process. Within this list of the best pediatric hematologist-oncologists, 179 have been named to a highly selective list of America's Top Doctors (ATD) by achieving national recognition for outstanding work.  Dr. Manera falls in the 179 doctors with this recognition.  

Link:

http://health.usnews.com/top-doctors/directory/best-pediatric-hematologist-oncologists?specialist=Pediatric+Hematologist-Oncologists&doctor=Name&hospital=Hospital+Name&doctor_gender=&sort_by=name&specialties=050&location=City%2C+State%2C+or+ZIP&specialty_plural_urlname=pediatric-hematologist-oncologists&page=14