Day 87

Kennedy modeling Kora's hair.

There is a different set of rules when your child has cancer in regards to discipline.  It is very hard to not let them get away with everything and anything.  Also, the self-soothing technique we as parents spend months helping them learn when they are infants is also out the window.  With all the craziness Kennedy experiences, we never want her to feel sad or inconvenienced, we want to make it all better and in the process, she has forgotten how to self-soothe aka – put herself to sleep.  This may not seem so bad; you may figure we can lay with her until she falls asleep but unfortunately she is up 2-3 times during the night and have start the process over.  I think I got more sleep when she was an infant than I have in the last 80 days. 

Last week, I put my foot down.  She needed to learn how to put herself to sleep again and the incentive was a visit to American Girl on her birthday in addition to her birthday party.  The deal was that we would put her to bed at night but in the middle of the night when she gets up to go to the bathroom, she would have to go back to sleep on her own.  She would need to sleep through the night for 3 consecutive nights without making us sleep with her or ending up in our room.  Well, some nights she did good, others not so much.  To throw a curve ball, add in her hospital stay and itchy rashes and we have to start from the beginning.  When she is sick, she can sleep in our room.

Kennedy's fashion show

Last night, was the night of all nights.  We have 4 nights until her birthday and it counted as the first of 3 consecutive nights.  She wouldn’t go to sleep on her own so she agreed that if I listened to her meditation tape with her, she would not wake us up in the middle of the night.  I agreed.  At 3:30 am, we got a tap, tap, tap on the door followed by  “I can’t to sleep by myself”. I said fine, bring your pillow and blanket in our room but remember, this means no American Girl Doll.  She decided to go back into her room after a quick potty break. 10 minutes later, another tap, tap, tap – “mom, I peed in my bed”.  Well, that wasn’t possible, I just heard her go pee.  I said “Kennedy, go back to bed”.  She said, “mom, really, I peed in my bed”.  I got out of my bed and felt her pajama bottoms and she was soaked.  I then went to her bed that was also soaked….and cold.  Turns out she poured a cup of water on herself and bed to get me to come in and change her sheets and put her back to bed.  I had to pretend I was mad but it was pretty darn funny and VERY witty.  There comes the problem again of how to discipline a bald little cutie with cancer.

Enough about my lack of sleep and Kennedy’s antics.  The rest of the weekend went well.  Kennedy got released from the big house (hospital) by 2pm on Saturday, the shortest stay yet.  She got to see grandma and put on a fashion show for us.  Sunday uncle Sergey came over and hung out with dad and played outside with the kids.  Dad took the kids to shoot some balls later at the golf range but it started to rain.    

Hanging out with Grandma and Jaxon

Today K had some mouth sores and has been nauseas.  Hopefully all will subside by her birthday on Thursday.

Day 84

I just left my two favorite baldies and went home.  Today was a nice day even though it was spent in the hospital.  Kennedy finally went to sleep around 1’ish last night and I couldn’t fall asleep until around 2:30 (and of course I was up at 6).  Taking into account the potty breaks every hour or so from the chemo and fluids, I think I slept 2 hours.  Sleeping beauty woke up at 10:30 full of energy and with my lack of sleep it was hard to keep up! 

Kennedy made me a mother’s day  t-shirt in the playroom, played kitchen and built with lego blocks for most of the day.  When she was done with that, we went in the teen lounge, where she had some popcorn and watched the Muppets.  I think I passed out half way through the movie.  When we were done with that, we went back to her room and did some school work and hung out until dad came with her strawberry milkshake.  She didn’t eat much today and we were hoping she would drink the shake but she only had a few sips.  Dad brought dinner for us too and since Kennedy didn’t like the smell, we pulled out some chairs and her tray table and dined in the hallway.  We had a semi-date night of 15 minutes or so in the corridor of the hospital (thankfully we were at the end of the hall). 

Maddox is at Grandmas tonight and I was a bit worried about coming home to an empty house but am actually enjoying the silence.  I’m looking forward to catching up on some much needed sleep.  Tomorrow Maddox has baseball practice and a birthday party so we’ll have some time to hang out in between.  Hopefully when he’s done with both, K will be ready to come home and we can meet dad to pick her up.

Sweet Dreams!

Day 83

Kennedy’s Blog - I asked her to write tonight so I typed as she spoke. From the mouth of a princess at 12:35AM:

After her antihistamine - Miss. Hyper
walking the halls all night.

K made her own butterfly wings.

“I had a pokey in my back. I saw four eyes and went back to sleep and woke up and there was two eyes.  And I went to the hospital and we went to the room and we changed the room to a different room.  And the other one we went was so fresh that I liked the smell.  Mommy came at night.  Daddy was in the morning and mommy was night.  I had ice cream, I had vanilla that was melted and I had chocolate that was not melted but I ate it so fast that I needed to go to the bathroom.  At my birthday we are going to get an American Girl Doll and have lunch with her.  And I’m going to bring her home and she’s gonna have her ears pierced when she’s at that place and have her hair done and then we go get her dressed up with a beautiful outfit.  She’s gonna look so beautiful with that stuff and mask on her eyes and she’s gonna look beautiful with her earrings.  And for my birthday I’m going to do a princess party and wear a crown and wear my own dress and wear my own make-up and mommy will do my nails on my toes and the princess party will do my nails and put glitter on me.  I’m going to take nauseas medicine and do a flush before I go to sleep – uh oh, I have to go pee. The end."

Day 82

This week has been hard.  I’m tired of pretending I’m strong and everything will be okay because this week, even I’m not buying my positive BS.  I’m tired of telling other people that “it’s okay, we’ll fight it – there is a high survival rate for ALL leukemia”.  After this hellish week, I’m more afraid of what the meds or infection may do to her than cancer.  People should be comforting me, not me them but when they try, I feel uncomfortable and wind up comforting them instead.  And then, the people that want to listen, I don’t want to talk to but complete strangers that say “I’ve heard”, I want to break down and start sobbing – for example, the guy that was helping me buy a DVD player at Best Buy today.  Thankfully I pulled it together before anything came out.

Enough about me, let’s talk about the itchy red rash that bombarded us on Monday.  Needless to say, I didn’t sleep all night on Monday, worrying if her throat would close up.  I watched the clock intently for each 4-hours to pass so we could administer Benadryl.  Gene slept a few hours but barely enough. 

I woke up Tuesday morning sick as a dog so Gene took the day off of work to take Kennedy to clinic at 9am.  I wanted to go but the risk of getting her sick was to high so Gene told me to stay home; I didn’t get out of bed all day.  Gene called me when the doc entered the room.   Dr. Sarvita, thought the rash was from meds but couldn’t say for sure it was Bactrim.   I disagreed – Dr. Edan had been spending her sleepless hours looking up the side effects from each of the meds K has taken in the last month and Bactrim was definitely the culprit.  She then went on to say we could try  Bactrim again in 2-weeks to know for sure….really?  Hell no.  There is no way Kennedy will be getting a Sulfa based med in quite some time.  Also, her birthday party is the weekend she would try again and the last place I want to spend that day is in the hospital with a restricted airway and a red itchy rash.  The allergic reactions to Sulfa can be so severe and I consider us lucky that we just had a rash.  Stevens-Johnson syndrome can also occur from Bactrim and I am not willing to take that gamble to “see”.   The doc will be prescribing a new med in place of Bactrim which is more of a second line of defense against PCP pneumonia and not as effective as Bactrim.  The bad thing about the new drug is that they will continually need to check her liver enzymes as the meds tend to cause liver issues.  Do we have any other options???

Dr. Sarvita suggested a few days of prednisone steroid and a heavier antihistamine but she wanted Kennedy to first see a dermatologist.  She made an appointment for Kennedy at a derm doctor in LaGrange for 11:30.  Between appointments, Gene took K out for pancakes and right as they got their food, Kennedy’s rash started to make its appearance known.  She hadn’t gotten Benadryl all morning and the rash had found its way all over her body and face and she was just miserable.  She didn’t eat. 

The dermatologist, who also brought in more doctors, thought the rash was likely caused by Bactrim and thankfully did not suggest a steroid – saying the steroid would only temporarily make the rash disappear, only to return again in a few days even worse.  They prescribed 2 antihistamines and Zantac.  This has thankfully been doing the job and there has been no rash today.

 

Tomorrow is clinic where she gets her spinal chemo infusion and is then admitted for a 24-hour methotrexate drip.   We made her a “no pokeys” nightgown since she already grew out of her favorite shirt.  We also let the kids stay up for a late snack together since they won’t see each other for a couple of days.   

I feel sick thinking about all of the chemicals they are pumping into her little body and what the next reaction may be.  No one prepares parents for having a sick child and what that means; the toll it takes on the family, the siblings and the sick child.  Today I can’t hold it together and I can’t be strong and I wish I could be okay with that. I’m just tired and scared, maybe tomorrow will be better.

Day 80

If we’ve learned to expect anything, it is that anything is to be expected.  It has been three weeks without heavy-duty chemo so things should go smoothly right?  I mean, she takes her nightly chemo and weekend bactrim but we are on hiatus from the heavy hitter until this Thursday.  So what the heck happened and why is she covered in hives and burn-like welts?

Gene got a call at 2 today that Kennedy was a bit itchy on her head, likely because she was playing with scotch tape, affixing hair strands to her head.  We didn’t think much of it, just a bit of an allergic reaction to adhesive.  Boy were we wrong.  I had a personal training session scheduled at 6 and had a bit of time to stop home on the way from work to check and see what was going on.  When I got home, Kennedy had sunburn like patches all over her body.   Needless to say, I didn’t make it to the gym and went into fix-it mode (or is it "try to fix-it" mode?).  I gave K some Benadryl and made a call to the doc (with a double check call to cousin Nicole who is also a pediatrician).  The diagnosis is that she is likely allergic to one of her meds with the culprit being bactrim.  5% of the population is allergic to sulfa in bactrim but we won’t know until she tries it again in 2 weeks.  The bad thing is that bactrim helps her fight off a possible PCP infection that could cause life-threatening pneumonia.

We also learned about another med tonight that has an interesting effect on Kennedy - Benedryl.   Benadryl makes her bounce around like a clown and as soon as the dose kicks-in, instead of her getting drowsy, she gets extremely hyper.  It was some light comedy in the midst of her itchy misery.  She literally was bouncing off the walls, running from one to another and pushing off, then becoming a frog and hopping around the room.  The Benadryl eased the itch and infused some energy but unfortunately, after just 4 hours, the hives, redness and itchiness returned with a vengeance and now Benadryl is doing no good.  Gene called the doc for the second time and we were told to watch to make sure she can breathe and if the reaction doesn’t subside by the morning, to go into clinic for a shot of something stronger.  We tried and Epsom salt bath and covering her in calamine lotion.  Now we wait.  As of this moment, she is in our room itching.  

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