Day 33

This morning it was hard to leave the house.  K was a bit nauseated and I went to work leaving her on my bed with bucket in hand, I felt awful.   I left my phone number and Gene’s phone number with K and she finally figured out how to use the phone all by herself. 

Gina and K cooking

The first call was to tell me her neck pain returned and she wanted Tylenol.  I told her to look at the clock and if she still had the pain in 10 minutes, to call me back and I would have Gala give it to her.  Instead she called dad back in 10 minutes and he arranged the medicine with Gala.

Thankfully, the rest of the day got better. Molly came over to work with K on her writing and she wound up painting Kennedy’s and Maddox’s face.  Kennedy had a butterfly mask and Maddox had “Go Bulls”. 

I met with the Red Cross today and we are working on setting up three blood drives at the HIP: one in May, one in June and another in September. I also caught up on some projects I had put off and overall had a good day.

Dad and Maddox at the Bulls game

Dad took Maddox to a Bulls game tonight thanks to his boss Jolie (thank you!).  It was a great time for them to bond and Maddox really needed some one-on-one dad time.  Gina came over to play with K for a few hours and we wound up making cookies, playing a game and creating jewelry.  Around 8’ish Kennedy started feeling queasy so I walked Gina home across the street, gave K a bath and put her to bed.  I finally sat down for dinner at 9 – long, long day!  I miss my boys.

Day 32

Last night remained bad until about midnight.  Finally K was able to keep down some Zofran and she felt normal and was giggly until around 1am until she finally fell asleep.  We were afraid sleep wouldn’t come for her since she slept all day and felt so awful.

K woke up okay but then complained of severe pain in her spine, near her neck.  Again, no fever so we gave her some Tylenol.  After eating a little for breakfast, she was nauseated again so we gave her Zofran and that seemed to help.  She jumped in the shower and hung out there for about an hour.  After all the pukeys yesterday, chocolate ice cream no longer works as a good mixer for her meds so we’ve switched to mint chocolate chip and were able to get her meds down.

Kennedy and Emily and their puzzle

Stephanie came by today with Emily for a play date.  We made cookies, dyed eggs and worked on a puzzle.  It was a nice afternoon and K kept up nicely.  It was nice to see her interact with someone her own age.  She wasn’t as social as she normally is and it took forever for her to actually talk to Emily but finally, they played like kids should.

Grandma came by later and helped me complete my kick of ultimate organization.  Something has gotten into Gene and me, we have started organizing and cleaning like crazy.  I guess it makes us feel we can control something since we feel like we no longer have control of anything.  Gene was installing shelves and cleaning his workroom and I disassembled and reassembled both kid’s rooms along with the basement playroom.  Getting closer to finishing, one more weekend I think.

Grandma and the kids dying eggs

Maddox came home around 7pm from his night with Alek.  They went everywhere – swimming, the movies, out to eat….and the list goes on (thank you Jane, very much!).  It was nice to see Maddox so happy.  As awful as we feel for not spending time with him, we know we can’t compete.  When K is sick like she was the last day and half, the house needs to be quiet.  We know he tries so hard to get our attention but we are so preoccupied, it is hard to give him the feedback he deserves.  It’s also not fair to him to keep him cooped up at home asking him not to be a wild, crazy and fun kid.  Being out and about is the best place for him until the chemo side-effects wear off (hopefully over the next day or so).  

When Maddox came home, K was feeling pretty good.  We all dyed more eggs, he read to us, we read to him and he crashed from exhaustion.  Later in the evening, K complained of the neck pain returning and some nausea so she had another dose of Tylenol and Zofran.  Another big change is that she barely eats, dinner consisted of rice and a piece of bread.  What a change from only a few days ago.

Gene and I both have work tomorrow so K will be with Gala.  Hopefully Thursday's chemo will wear off and K will have a happy, fun and pain-free day.

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.