Days 49 and 50

Waiting for Chemo

Kennedy was doing great the past few days until the nausea and mouth sores took over.  I’m not sure if the nausea is a lasting effect of the hospital stay or if it is the 6mp pill.  The mouth sores are definitely a side effect from the stay and should subside in the next few days.  Doc called in some Tylenol with Codein and a Lidocain rinse, the latter has been a big help.

Finally finishing up.

Today was clinic.  Kennedy’s counts were 1,900 - a great level, especially considering the intense chemo.  She is not neutropenic and may avoid neutropenia completely during this course of treatment – YAY!!!!  My only complaint of today’s clinic visit with the length of time we were there.  We got there at 9ish and didn’t walk out until 12:40.  Over three hours for a 15-minute chemo drip!!!  I recently learned this is standard so we will plan our clinic days accordingly.

After clinic, Kennedy and I went to Build-A-Bear, Rainforest Café and did a little shopping for her.  It was a great Mom and K day.

"Pokey" my new dog-bear
and his friend

I did have a meltdown today right before clinic.  Blue Cross Blue Shield called yesterday and left a message to call back (no details).  Of course, my mind started racing about all the treatment they wouldn’t cover – all in my head.  When I returned the call, the caseworker that called me had a voicemail that said she was out of the office until April 5!  I left a message and a different (very young) caseworker called me this morning as I was running late to clinic and trying to park the car. 

I never would have answered but I was so concerned about the reason for their call, that I immediately picked-up – BIG MISTAKE.  The first question was IF I wanted a case-worker assigned to us.  I was told it wasn’t mandatory but I was getting the feeling I should accept, so I did.  She said she was calling about K’s history of Leukemia – “history of Leukemia???”.  I noted that if history means from February 2 – than okay.  She went on to tell me that she would call me every week (lucky me) to discuss her treatment.  I told her that her treatment is a pretty standard protocol so I wasn’t quite sure what we would discuss and if it was necessary.  So as I was trying to get Gene’s big beast of a car into a spot – running 15 minutes late, she proceeded to tell me that I would need to contact them with all procedures that would be more major, like tests.  I told her that the hospital has done that in the past and I often don’t know what is considered major.  She said, “well it is your responsibility to inform us to make sure the treatment is covered”.  Did I miss something? All of a sudden I was getting a lecture?  So I said, “Listen, I can’t talk – I’m late to clinic, I’m trying to park the car”.  So she said “I’ll wait”.  OMG!  So finally, as I am in tears – I told her I will do my best, I need to get my kid inside and she may be adding a psych evaluation to her list of about to be covered testing.  So she told me she would be calling me next week. 

Is it really necessary for BCBS to torture the insured every week?  Do I need to talk to this insensitive 20 year old?  I’m fearful if I reject a caseworker it may cause more issues.  I’m going through enough and getting a weekly lecture about something I haven’t done wrong is completely unnecessary.  Just blogging about it gets my blood boiling again.

When I got of the phone, K asked me why I was crying.  I just said that moms get sad too sometimes and people are ignorant.  She then went on to remind of the three times she saw me cry - thanks Kennedy :)

2011 November - before cancer

I put this album together today from our family photo session in November 2011.  It's strange looking back and seeing our life so normal just a few months ago.

Click here to view this photo book larger

Days 47 & 48

K and Gala before I left for work

The last two days we’ve been at work and Kennedy has spent the days with Gala.  Things have been mostly uneventful but she has had some nausea and developed mouth sores from the chemo; nothing a little Zofran and Tylenol can’t cure.

After work we’ve been keeping busy.  On Monday we baked and tonight our neighbors (Kaitlyn, Gina and Cannon) came by to play with K and Maddox outside.  Kennedy is on cloud nine playing with the older girls and they are so good with her.  We are definitely lucky to live by such wonderful people.

It seems that the whole neighborhood is going on spring break.  It’s interesting to think that if K didn’t get sick, Gene and I would be in Oahu right now and the kids would be shuffled between Grandma and Gala.  The thought of ever leaving them now (or ever in the future for that matter) doesn’t even seem like it will be on the table again.  It’s not that I don’t think that K will get well and all will be fine, it’s just that I can’t imagine ever being far away from them again.

Gina, K and Kaitlyn

Life certainly is different and different isn’t bad.  It’s bad Kennedy has cancer but it isn’t bad that we reprioritized how we live.  We finally slowed down and have time to appreciate things more. 

Today I appreciated some “me time”.  Instead of running straight home, I stopped at a store and bought the family some stuff.  Nothing we really needed but I just needed to take a break between work and home to regroup.  Although I love coming home to the children, I needed a moment to exhale and reboot so I can stay positive and prepare for entertaining them.  Laying down on the couch and watching TV is no longer on the table.

Thursday is clinic and the start of a 7-day steroid run.  I’m not quite sure how I’m going to keep K from eating for the 2 hours before and 2 hours after her 6MP pill since her appetite will be surging.  Any ideas???  Middle of the night maybe?  Not looking forward to the return of the eating machine.

Day 46

Today was just one of those days that we all got a break from cancer.  Kennedy probably shouldn't have been doing half of the things we let her do but who could stop her with that smile.  She was getting pumped with poison just 48 hours earlier - you would never have known if you saw her today. In about 8 days she will be neutropenic from the chemo and we'll be back to our bubble/germaphobic lifestyle.  There was no way we were going to take today for granted -  it was a blessing for all of us.

Bubble Fun

Pre Car Wash

From Car Wash to Dog Wash

Slip-n-Slide at the neighbors

Scooter Ride to Red Box and Ice Cream

Day 45

Sibling Love

So as bad as Thursday was, today was just the opposite – at least it ended well.  Kennedy went home a day early!

Things were pretty rough all around for this hospital stay.  Apparently, our bag was the first of two chemo leaks at the hospital this weekend and they traced it back to some faulty tubing.  Thankfully the 2^nd leak didn’t happen to us but it is still frustrating.

Dr. Maddox

Another hiccup this weekend was lack of testing supplies for Methotrexate levels.  For Kennedy to be released, her Methotrexate level needed to be at .2.  This morning the level was at 3.5.  When they rechecked at noon, they apparently ran out of testing supplies and needed to send the blood out (which takes 4-6 hours versus 1 hour).  By 5pm, the outside lab had called and Kennedy’s level was down to .11.  Great news for us that she got to go home but had the hospital not run out of the testing supplies, we would have been home hours earlier.  Okay – enough complaining.  The victory is that she flushed the drug out of her system very quickly.  I'll just sum it up and say this stay wasn’t the best and hopefully our next five admits will turn out better.

Mom and Maddox's day out

Today Gene spent the day with Kennedy and I had some much needed one-on-one time with Maddox.  Maddox and I went to our classes and then rushed off to try and catch the Palatine parade.  Unfortunately, Maddox was completely crabby and we left 10 minutes after we got there.  I thought his crabbiness was due to him starting to get sick (he had a stuffy nose and was sneezing in the morning). I took Mr. Crabby home and we hung around and watched a movie.  Once he snapped out of his funk and his mysterious illness disappeared, we went for a scooter ride, headed for lunch at Rainforest Café and then were off to the hospital so dad and I could swap kids.  I was all set for my night - cousin Nicole even planned her evening to visit us in the hospital with K’s cousin Maya.

K and Cousin Maya

Right before I turned on 1^st avenue, Gene called – “Kennedy is going home!” We got there and the room was a happy place.  Cousin Nicole and Maya still came and hung out with us until we were discharged.  Maddox dressed up like the doctor and was messing around with the extra IV flush being a complete goof.  The only rough patch was K removing the sticky stuff around her port line – lots of tears but all was forgotten moments later.

Glow sand

When we got home we had a lot of fun just all being together.  We started a fire in the backyard and made s’mores and played bags.  Later the kids played with some glowy sand (which is a mess!) and then we all watched a movie.  Being home is so much better than the hospital so we all soaked up every second.  There is truly no place like home!

Day 43

So things must have been going too well because tonight we had a hiccup.  The hiccup probably could have been avoided by changing out the faulty iv pump 2 hours prior but instead we sprung a chemo leak.

I got to the hospital at 6:00, the time they started the methotrexate drip.  We soon learned that the iv had no battery backup and the minute it was unplugged from the wall, we had about 20 seconds before the whole thing went completely dead.  Our nurse said she ordered a new one but it never came and she never followed up.  This meant very interesting trips to the bathroom.  The methotrexate requires mass hydration so k needed to pee every half hour.  The routine was getting up, having k cross the room half way, unplugging the machine and running to the bathroom to replug in the machine.  We made it every time but once, the machine went dead....again.  You'd think this would serve as a reminder to the nurse (that and my complaining about the situation) but it didn't.

The last mission, not sure what happened but the chemo tubing sprung a leak and the chemical began spraying everywhere.  Apparently chemo is toxic so we then had 4 nurses in here with full gear cleaning up.  Do I need to mention that the chemo leaked on my arm and even after scrubbing the area, it was red and itchy?  Oh - and miraculously they had another pump right there for us to switch out with.  On top of it, because of the need to act so quick, instead of putting heparin in her port, they just did a quick flush.  They told me they didn't know when the new chemo would be ready. 

After an hour, I asked our nurse for Helprin to ensure the port doesn't clog up where K would need to be reaccessed.  She said she'd order it.  Why the hell did I have to remember this?  On top of it, I asked about hydration.  K was 't drinking anything and I am certain she is supposed to stay very hydrated.  They said not to worry about it that the chemo should come by 11 - two hours after the chemo was originally removed.  Not to sound doubtful, but I don't trust that decision but I have no one up here to talk to.  Thankfully the nurse finally made me feel better by starting the hydration early, despite pharmacy saying it wasn't necessary.

So now we wait.  I absolutely love the doctor but I'm really disappointed about the lack of communication and carelessness tonight.  I don't know how we are going to bare another 5 stays here. Tonight sucks.

On a side note Kennedy had a great day with dad and things went smoothly at clinic.  She even got some laughs with her adorable new t-shirt "no-pokeys" (thanks Kim).

Days 40 & 41

K and Sofia playing Barbies

Kennedy is still being a kid, which is wonderful.

Blanca and Sofia came by tonight.  We haven’t seen them in months and Kenendy was so excited.  The girls played independently which was fun to watch.  Barbies was the theme of the night.  

Post visit, we prepped for our first hospital admit on Thursday.  Hospital bag is packed and the plan is set.  Plans are interesting because I’m never quite sure how they will pan out.  Nevertheless, we think we have one.  Gene will take Kennedy for her spinal chemo on Thursday morning and then K will be admitted to the 4^th floor of Loyola to begin the 24 hour IV infusion of Methotrexate.  After work, we will change spots and Gene will go home and I will stay with K for the day on Friday.  Friday evening, Grandma will come and watch K while Gene and I sneak out to a work retirement party for a few hours (the first time we’ve been out alone in 40 days).  Friday night, post dinner, Gene will stay at the hospital and I will go home to pick up Maddox and take him to swimming the next day.  I’ll spend part of the day with Maddox Saturday and then switch spots with Gene.  Gene will go home to hang out and spend the night with Maddox; I will stay with Kennedy in the hospital while they continue to flush out the chemo.  Sunday, we should go home sometime before noon.  Granted, this is the plan but as we’ve now learned, plans change. 

The BN postcard with Ella

I received a nice surprise at work today.  Our marketing department has a longstanding relationship with Bear Necessities. Recently, we donated funds for some bear-hugs so three teens fighting cancer could get gowns for a gala.  As a thank you, we received an adorable post card.  On the front of the card was Miss. Ella.  There was something magical about seeing Ella on that postcard.  People often tell us, as parents, how strong we are. But really, we don’t have a choice – often we don’t feel very strong at all.  Children on the other hand, they can break down, scream, fight us every step of the way but for the most part, they don’t.  They trust us.  They trust that we are doing the best thing for them and they never question it.  Kennedy, Ella and all these other kids battling cancer are the ones that are strong.  All of the perceivable strength we have comes from the children that stand so tall while fighting this disease.