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

Day 23

A good day.

Kennedy before clinic

Outside of waiting a little longer today and me freaking out about being in a pediatric waiting room full of germs, clinic was GREAT!  Dr. Manera was out and his associate Dr. Hemminway saw K.  No platelets or transfusions needed and the antibiotics were stopped (so no re-accessing the port).  In addition, her blood counts were up (ANC is now at 400) but she is still severely neutropenic* .   I’ve used the word a lot so figured I’d define it below.

She received her Vincristine chemo and we were done.  My biggest concern of the four hours was Kennedy being scared about having the sticky removed from around her accessed port and not having enough food to satisfy her.  Thankfully, the nurse let Kennedy remove the saranwrap-like sticker herself and we had just enough food to keep her from going crazy. 

The rest of the day was uneventful. Kennedy took a nap when she got home and played with  Maddox most of the evening.  I walked half way down the stairs to the basement to check on them and heard Maddox sweetly saying “I understand, you’re always hungry”.  Apparently, Kennedy was filling his ears with conversations about food.

Kennedy usually has some nausea after the Vincrisine but lucky for her, nothing yet.  Here is to celebrating no pokeys, better blood counts and togetherness.

*Neutropenia (noo-troe-PEE-nee-uh) is an abnormally low count of neutrophils, white blood cells that help your immune system fight off infections, particularly of bacteria and fungi. You have several types of white blood cells, and between 45 and 70 percent of all white blood cells are neutrophils.

The threshold for defining neutropenia varies slightly from one medical practice to another. Neutropenia in adults is generally defined as a count of 1,700 or fewer neutrophils per microliter of blood. The cell count indicating neutropenia in children varies with age.

The lower your neutrophil count, the more vulnerable you are to infectious diseases. If you have severe neutropenia — fewer than about 500 cells per microliter of blood — bacteria normally present in your mouth and digestive tract can cause infections.

Day 22

Had a great mommy/daughter day at home.  We started the day by making sugar free cupcakes and decorating them.  We played Barbies, did some art projects and ate a lot!  Kennedy’s girlfriend Sofia came by for an hour.   

Listening to her talk to her girlfriend made me realize how much K thinks about food AND how much she’s grown up in only 22 days.  K has been with adults so often she is starting to sound like one.  

All four of K's build-a-bears that she built in the hospital arrived today.  Kennedy was ecstatic.   I’m thinking we will be ordering another one tomorrow  after clinic. 

Molly came over to help K with some pre-K projects.  I thought I had to prepare a lesson plan but Molly had me beat.  She came with a packet of shapes and site words – thanks Molly.  After they were done, Molly spent some time playing build-a-bears with both K and Maddox.

Tomorrow is another mommy/daughter day and a chemo day.  It is also the day we find out if they need to de/re-access her port for more days of home administered antibiotics.  I prepped K for the Pokey just in case.  We also packed a ton of food and crafts (just in case her counts are low and needs blood or platelets). 

Hoping for an easy day at clinic tomorrow, no pokey and another fabulous day with my sweet girl.

Day 21

Written by daddy Gene:

Full good day at home.  We were all happy to be sleeping in our own beds, finally! We bought a baby monitor so I could hear her all night.

I had to administer antibiotics at 6 am so mom could sleep before work.  I looked forward to going back to bed but I got the wakeup call at 7:15 am, “I am hungry!!!  Daddy you promised you were going to make a special breakfast”.  I promised to make Mickey Mouse pancakes with M & M’s the night before in yet another conversation about food.  The promise was fulfilled and both kids were eating pancakes by 7:45.  Mom grabbed one on the way out the door too.

Kennedy was feeling good all day, but needed to take a few naps to recharge.  The challenge was again to ensure she did not over eat. She is constantly hungry because of the steroids that she takes.  I went to the store and got organic chicken and our nanny made a fabulous soup.  Getting Kennedy to eat meat is sometimes a challenge but Kennedy liked the soup it so much she ate 3 bowls.

In the afternoon we built a dollhouse together for hours and Kennedy played dress up with a new hat and glasses.  Molly came by to help Maddox with homework and said “hi” to Kennedy.  I noticed Kennedy was very insecure about her “baby” hair (as she calls it) but thankfully Molly is great with her and told her how beautiful she looked.  Molly will be tutoring Kennedy while she is out of school.  We are lucky to have her since both kids adore her.

Mom came home and took Maddox to wrestling and went to work out.  Grandma came by to visit.  Today was an uneventful day, which is a good thing.

Before bed, Kennedy had a meltdown when she was brushing her teeth.  She hates her hair and wants to shave it off now.  I don’t feel so great about it but mom thinks it’s ok.  We will sleep on it and see how Kennedy feels tomorrow.