Monday, April 30, 2012

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.

Friday, April 27, 2012

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!

Thursday, April 26, 2012

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."

Wednesday, April 25, 2012

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.

Monday, April 23, 2012

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.  

Sunday, April 22, 2012

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 7th 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 4th 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.

Tuesday, April 17, 2012

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

Friday, April 13, 2012

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.

Wednesday, April 11, 2012

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.

Tuesday, April 10, 2012

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.

Saturday, April 7, 2012

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

Thursday, April 5, 2012

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 2nd 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.

Tuesday, April 3, 2012

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.

Sunday, April 1, 2012

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 35th 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 4th 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