Day 72

The past two days have been nice with our bald little cherub.  She’s been happy and active and thankfully the mouth sores have subsided.  Mom was home on Thursday and dad was home today.  

Thursday I took Kennedy to create some pottery and today dad took K on a long bike ride and to the park.  We also met with one of K's doctors at Loyola to discuss her care.  Thankfully both days have been uneventful and I have silly pictures to post. 

Moving on to more important things like why we met with a doc to discuss K’s care.  I’m sure some of my blogs have touched on issues we have had with clinic and hospital visits.  Her doctor’s are phenomenal but we’ve had more than a few hiccups along the way with some of the overall operations.  That being said, when we brought our issues to light this past week to Megan (the fabulous Child Life Specialist), the entire team took our concerns seriously.  We received a call from the pediatric floor administrator and also met face-to-face with the director of pediatric hematology, who is also part of Dr. Manera’s team.  I can’t say I’m happy that we faced some of the things we did but I can say I’m happy with the reaction we got.   As with anything in today’s day and age, we have a choice of where we go for Kennedy’s care.  Nothing is perfect but there is something to be said about a team that truly cares and that was seen in their immediate response, and truly felt when Dr. Hemenway took over an hour out of his day to sit down and meet with us about our issues.  I’m sure there will be more bumps over the next 2.5 years but at least we now know someone is listening.

Day 70

Pre-hair cut

Shorter dad, shorter.

We're twins!

When she’s right, she’s right.  Kennedy and dad now have the same hair cut and it is oober cute.  The comb over is now gone and she has an adorable pixie cut (more like a buzz).  Before we started cutting, I felt sick as did Gene.  We weren’t sure this was the right decision but we knew it was coming, she wanted it and we did it.  I started by taking an inch off all around but she wasn't happy so dad pulled out the hair clipper.  When it was over, we were all happy.  Kennedy said “Bye Cancer Hair”.  The cut made her look vibrant and healthier than we've seen her look in a long time.  We have one smart, beautiful and strong little girl.  All of our strength comes from this sweet and chatty little 4 year old.  Tonight was a good night.

Day 69

Not too much to report – thank goodness.  The mouth sores have reappeared with a bit of nausea this morning but otherwise, Miss. Kennedy is in good spirits.

We had a great rest of the weekend.  On Sunday, Kennedy insisted on going on an egg hunt because Maddox went on one with Anthony over the weekend.  On Sunday morning, I went to Jewel and bought plastic eggs and candy.  Maddox and I stuffed them and Kennedy had her own private egg hunt in the living room.  In the afternoon we were invited to a friend’s for the holiday and had a fabulous time (thank you Marci and Gene).   Since there were four kids in the house, we kept all the kids sanitized and Kennedy wore a mask whenever she was playing near the boys.  So far so good.  Not big on taking risks (not that risky with all the precautions I took) but she needed this and so did we.  Kennedy was so happy and it was great to see her acting like a normal kid.  Kennedy spent the day hanging out with Gina and Molly and couldn’t have been happier being with older girls.

Monday was uneventful, K stayed in bed all-day and relaxed while Gala catered to her in our room (every meal in our bed = lots of crumbs in bed).  I wanted Kennedy to catch up on rest so I told her to lie in my bed all day and she totally took advantage. 

Today was good too which marks 48 hours from her last play date.  Now my concern is that Gala is sick with a bad cold.  She was wearing a mask when I came home today but she didn’t even realize she was sick until the allergy med didn’t kick in and her back, arms and joints starting hurting mid-day.  Who knows if K was exposed but I’m praying not.

Thursday’s clinic is optional.  There is no chemo but we can take her in to check her counts and find out if she is neutropenic.  She was pretty low before the last treatment and I’m sure the chemo has done its job knocking it to the nadir. Kennedy says “yes”, she wants to have the blood test so she can have play dates (she’s on lock-down this weekend).  Mommy thinks “no”, I don’t want to unnecessarily expose her to sick kids in the doctor’s office or an extra pokey.  Miss. social hates not being out and about or hanging out with friends. Not sure what to do.

Kennedy also wants to shave her head.  She saw the bald spot that covers most of her head in the mirror and says she just wants to shave the rest off.  Dad and I are against it.  The little hair she has is around the front and side of her head and looks cute under bandanas and hats – sometimes we can hide the fact that she is ill and avoid stranger looks, pity and questions.  Trying to postpone this one because the chemo she is on may allow her to keep her hair, although it has become scarce and very thin, she may still have some.

Day 66

My favorite girl

We’re home and happy.  We were pardoned at around 4pm and finally left at 6.  These hospital stays are exhausting for all of us because we are up most of the night for potty time every 2 hours.  Plus, there is construction at the hospital that seems to start at around 7am every morning – that doesn’t help things at all.  Gene was on duty last night and was pretty tired when I got to the hospital today.  Kennedy was nauseated most of the day but it went away and we had a great night at home.

The Greco family dropped off Maddox around 7 tonight and stayed for dinner (thank you Chris and Angela!).  Maddox had a great mini vacation hanging out with Anthony but was super excited to come home and see his sister.  He ran upstairs and gave her a big hug the minute he came home.  Kennedy insisted on skyping with Maddox both nights she was in the hospital.

K and Emma tonight

Kennedy was very excited to see and play with Emma.  K is borderline neutropenic so of course I was chasing the children around the house with hand sanitizer but it was worth it to see her smile.  Kennedy’s counts will probably drop lower over the next few days so we were lucky to sneak in a play date before she is on complete lock down.  Looking forward to a nice day at home tomorrow and a bit of calm before the chemo kicks in. 

Pictures from Maddox’s mini vacay and K’s weekend below.  She had fun doing syringe painting in the playroom - who would of thought that syringes make a great painting tool?

K and her Syringe Artwork

At Chuck E Cheese's

Pre Egg Hunt at the park

At the Arboretum

Day 64

So here I am, back where I started the blog – sitting on the sleeping bench in Kennedy’s room at Loyola.  Kennedy almost didn’t have treatment because her counts were very low and she is back to being borderline neutropenic. 

Gene took Kennedy to clinic today and said it was very busy.  Many of the regular nurses weren’t there and the wait was longer than usual because everything was backed up, including pharmacy and lab.  Kennedy didn’t cry or scream when they accessed her port though she said it still hurt, just not as bad.  They took Kennedy’s blood and the initial counts came back around 400.  If the final numbers came back at the 400 level, they would need to send Kennedy home until her ANC went over 500.  Thankfully the final counts came in at 544 so they were able to start treatment.  

Dr. Manera is off for the rest of the month so Kennedy had Dr. Sarvita today.  First came the spinal chemo infusion.  Instead of our usual nurse administering the anesthesia, a doctor Gene had never met came in to hook Kennedy up.  Apparently she washed her hands but then proceeded to hook K up without gloves, Gene flipped and she put them on.  You think this would be a standard thing in the chemo ward with kids having low immune systems right?  Then came the actual procedure.  It took 2 pokes to get to the spinal fluid because the first one was dry – Gene said he could barely stand for the 2^nd one.  

After the procedure, K and dad had lunch at clinic and were admitted to the hospital.  K kept dad busy with a ton of art projects, trips to the playroom and potty breaks (hydration pre-chemo).  I came to the hospital around 6 and Gene went home.  Gene was greeted by Aunt Joanne and Uncle Jerry who brought him a fabulous holiday feast (thank you!).  

Kennedy started the dex and zofran (steroid and anti-nausea meds) around 6:30 and the 24-hour methotrexate drip around 7.  We still have the three hours of fasting (2 hours before and 1 hour after) for her 6MP so we worked that pill in around 8:30 and concluded the night with a huge bag of popcorn, string cheese and cucumbers (welcome back steroids!).  We made more art projects, skyped with dad at home and also skyped with Maddox, Anthony, Emma, Angela and Chris at Maddox’s sleepover.  We had a very filling evening.

I did notice Kennedy has a bit of a stuffy nose and seems to be coming down with a cold.  Hopefully it stays benign and we go home on Saturday.  The cold could be the culprit of the low ANC, I just hope the chemo doesn’t knock her counts even lower.

Her counts today are just a reminder of how fragile her health is.  This of course brings me back to my rant the other day - why don't people understand?  It also brings me to Kennedy's birthday in May.  I booked a date for a small (very small) birthday but I have no idea if we can host it.  It is one week after her 3rd admit and a time her counts may be very low.  She said she'd wear a mask but I'm still not so sure it is a good idea.  It is a very delicate balance - she's been through so much and needs to have a birthday experience but her health is so delicate, I'm scared.   I guess we'll just wait and see and if anything, we reschedule it for another time.

Days 61 & 62

Miss Sassy K with her cool hat

Not much to report, which is good news around here.  Kennedy has a sassy attitude going on and we’re not sure if it is from the steroids she was on last week or just being completely spoiled.  Whatever the cause is, we’ll deal with it so long as she continues to feel well.  With the upcoming hospital visit, we know that nausea and mouth sores may be on their way so we’re soaking up every second of “good”.

On a side note, I got Gene to go to hot yoga with me today – finally!  We are both feeling pretty calm tonight so it did its job.  Grandma came back from Ireland and visited the kids and they were ecstatic!

This afternoon I was not so calm.  I had a conversation that caused much unneeded stress - apparently I caused this stress but who knows.  As I’ve posted before, we need to be very careful about Kennedy’s visitors.  Much of Gene and my family have not seen Kennedy since she’s been diagnosed because we don’t want to expose her to unnecessary germs.  K’s visitors are limited to kids because if we are going to take the risk of visits, it should be with people her own age that make her happy and heal her spirit.  Because of this, we have asked that many adults that don’t have kids not come to see her until after she is on maintenance (early August).  Well today it blew up in my face.  Apparently I made a long-time family friend feel “bad and hurt” by telling them not to come and visit a week ago.  I didn’t realize I caused this person distress by my request until today and it actually irritates me that this is such a big deal.  Why should I be made to feel bad for not exposing Kennedy to unnecessary visits?  I think sometimes my posts and pictures don’t represent the supervision that is really present with visits (like the massive hand sanitizer, Clorox wipes and even masks at times).  I understand many people love her and want to see her but if they really loved her, why don’t they respect the fact this is serious – it’s cancer and she is at risk for infections that can cause more damage than the chemo?  Anyway, I got the message second hand along with a guilt trip and it set me off.  Enough ranting but ARGGGGHHHH!!!!!

Starting to pack for the hospital.  We have a mile-long list and should finish cooking and gathering by tomorrow evening, just in time for the Thursday admit.  Maddox has a Thursday – Saturday playdate with Anthony (thanks Chris and Angela!).  Anthony lives out in Naperville so words cannot express my gratitude to the Grecos for coming all this way to get Maddox just to hang out.

Next blog should come from Loyola…hoping for an event free stay this time.

Days 59 & 60

K, Dad and Maddox at Starlight Event

Thankfully the effects of the steroid pulse fully wore off on Saturday.  Kennedy woke up happy and was upbeat all day.  It’s amazing how the steroids completely change her personality. 

Saturday evening we went to an event held by Starlight Foundation at Orbit Skate Center.  The foundation arranges entertainment for chronic and seriously ill children and this one was roller skating.  We signed up for it because it was near the house and it seemed like a fun thing for K to do.  K and Maddox had a wonderful time and despite all the leg pain K experienced earlier in the week, she was up and skating nearly the entire time.  For Gene and me, the experience was different.  Looking around at all the children that were disabled, blind, ill or wheel-chair bound made us realize how much our lives had changed.  When we first walked in I wanted to cry; I thought, “this isn’t for us, we don’t have a sick kid”.  But we do.  And those parents probably looked at our puffed up cherub with a big bald spot and thought the same thing, “that poor kid”.  Despite the sadness Gene and I felt, we made the best of it but I’m not sure we can go back.  It’s hard enough dealing with the fact Kennedy has cancer but seeing other ill children, children that won’t be cured in 2.5 years, is just too much to take.  

Even mom skated (I never skate!)

Saturday night I went out to celebrate Kora’s 35^th birthday downtown.  This was the first time I'd been "out-out" in 59 days.  Completely proving my radical social change, I left the house with Stephanie at 7:30 and was home by 11.  I think Gene could hardly control his laughter when I walked in so early – sober.  I tried, I really did, but I just could’t let loose when K is sick.  The tides change too quickly and I feel like I always need to be on guard.  I did drink a little but not enough to catch a buzz.

Sunday was a home day.  Gene made a huge breakfast and pulled out the juicer and juiced everything in sight – it was wonderful.  Kaitlyn came by to play with Kennedy.  I must say I love having such wonderful neighbors.  The girls played for hours and since Kaitlyn is in 4^th grade, I could relax and leave the girls alone knowing K was in good hands.  They put together legos, baked and roller skated/bladed a bit.  Kennedy really let loose and I think Kaitlyn was surprised how un-shy Kennedy could be.  Gene escaped to the gym at 2 and then I checked out to hot yoga (finally) at 4:30 and loved every second.  

K and Kaitlyn hanging out

This week will be a hospital admit.  K will go for her spinal chemo infusion Thursday morning and then get admitted for the 24-hour Methotrexate drip.  Hopefully, we’ll get to go home again on Saturday.  This new rhythm is hard to get used to and it’s sad that it is becoming ordinary for Kennedy.   When we told her that this week is an admit, she shrugged and said “AGAIN???”

I forgot to post some pics of Kennedy and Sofia playing with K's wig and hats with hair so I posted them below.  K wasn't wearing any of it until Sofia found them cool and now of course she loves them.  K tried to wear one of them to the Saturday event but got to hot.  I don't blame her for not wearing them but they are pretty darn cute.

K in Kora's Hair

Sofia and Kennedy modeling the cool hair