Days 77 - 79

Kennedy had clinic on Thursday and Gene and K were in and out in under 2 hours, which is record time.  Thursday’s visit was only a blood draw and doc visit in preparation for next week’s admit.  All good for now despite her cold – ANC was 2800.

Saturday night we tried to go on a date.  We didn’t realize how bad Kennedy regressed until we tried to leave.  Grandpa was watching K and Gene had a reservation for 7.  K was wrapped around my leg and refused to let go.  This reminded me of when she or Maddox were younger and had separation anxiety.  We had to leave her crying.  When we called to check on her 15 minutes later, all was fine.  She was scheduled to take her meds at 8.  We prepared them for grandpa, crushed her pill and mixed it with chocolate syrup like we do EVERY night.  Kennedy refused to take it.  We had to come home and cut our date very short to make sure she took it (reservation was at 7, we were back home before 8:30).  The minute I walked in the door, she walked over and took the medicine like nothing was wrong.  She refused to take the meds so we’d come home – smart cookie.  At that point, I knew if we stayed at home we’d be setting ourselves up for trouble in the future so we turned back around and went out for a few hours.  The rest of the night was seemless.

Since Kennedy started treatment at Loyola, we’ve been faced with the question of “why not Children’s Memorial?”  more times than we can count.  Although we have one of the top hemoc docs in the nation (there are 8 in Illinois), there are also 3 of the top docs at Children’s so we scheduled a consult just to see if we were in the right place.  There is now no doubt, we are.  Granted, we never even met the doctor because we left too soon but my gut was screaming to leave, so we did.

To start, the hospital is far for a suburbanite and the new one will be even further.  Add the Chicago city traffic, having the navigation instruct me to go the wrong place and the parking drama, and it didn’t start off well.  There was no parking.  Gene met me at the entrance to the parking garage and jumped in while I parked.  We drove to the top of the packed garage and were instructed to go the 7^th level for valet at no additional cost.  Since we were running behind, Gene dropped K and I at the elevator and continued to park.  Since we have keyless start, it wasn’t until he reached the top of the deck and we had made it to the 4^th floor that he realized I still had the keys in my pocket.  Thankfully the car was drivable to get out of the garage. 

To fully take-in the waiting room nearly sent me into a full blown panic attack.  There were at least 10 kids and their parents waiting to be seen (thankfully not by the same doc or we would have been there all day) with an additional group of kids in an art room.  One adorable little blonde girl, probably about 3 years old, was puking in a bucket.  Some kids were crying, half were bald and some looked fairly lethargic.  Needless to say, if you want a reminder of what cancer does to children, sit in this waiting room.  I was told the doc was running slightly behind and to take a seat and wait.  That wasn’t going to happen.  It was that moment that I realized Loyola was undoubtedly the place for us, for our life style and for our sanity.  Regardless of how wonderful Lurie’s Children’s Hospital will be when they open in June (which is supposed to be fabulous), the drive is too far and the waiting area would require me to down tranquilizers.  I don’t need a reminder of how bad it can be every clinic visit.  Just confirming, Loyola and Dr. Manera is where we are supposed to be.

Days 73 - 76

Kennedy and Sofia

Nothing much to report.   Kennedy had a play date on Sunday with Sofia and we went out to dinner that evening to celebrate Uncle Sergey’s birthday.  For now, Kennedy is acting like a pretty normal 4.5 year old.  She has also been chemo free for 2 weeks so it’s nice to see her “normal”.  She’s goes in for a blood draw this Thursday and is then admitted next Thursday for another 3-day stay.

Kennedy is becoming very spoiled which is normal I guess.  Who can say no to that cute little face?  Her latest demand was that our nanny feed her upstairs in bed while she pretended to be a baby.  She capped off her demand with  “you can’t say no to me, I’m a baby”.   She also demands that I sleep with her most nights.  She’s become a total night owl and sleep is scarce for me these days.  I’m exhausted. Kennedy’s play has changed a bit too.  Half of her build-a-bears now have ports which need to be flushed daily.  She’s taking on the roll of doctor and seems to like it.  It’s very cute to watch.  For now, when she grows up, she wants to be a “kid doctor”.  I guess her experience isn’t as bad for her as it is for me.

We met with the principal of Kennedy’s school today to discuss her entering kindergarten in the fall.  We are the first case of leukemia that the nurse or principal can recall in at least 10 years.  There is a lot of prep work for Kennedy but they seemed ready to handle it all, including sanitizing the room and educating the incoming students about her condition. Her teacher will be Mrs. Kehm who Maddox had.  We adore her and trust that she will do a great job protecting Kennedy.  Some parents or oncologists choose not to send kids to school while on maintenance chemo because of the risk for infection.  Others have a completely different view, which match ours.  We will do what is best for Kennedy taking every precaution necessary.  Kennedy is a social butterfly and needs school to be around kids.  It’s just who she is.  

Going to crash while I can.  Kennedy is still up playing, I wonder if she’ll let us sleep tonight??

Maddox made breakfast in bed for K

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.