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.

Days 38 & 39

K and her Build-A-Bears

 We had a great weekend.  When things feel normal, I don’t have the urge to write because I am too busy enjoying every second to stop and blog.

Kennedy acted like a normal kid all weekend.  She’s still introverted and a bit more clingy but that’s okay, I’ll take it. 

Saturday started off great and just continued to get better. Maddox and I went to our classes, Gene sold the trailer, Maddox went rock climbing with his pal and we had Miss. Ella and her family over for dinner.  We enjoyed the day so much it was as if “C” never entered our lives.  Saturday night was especially nice since we had a drink and sat with another couple that understood what we were going through.

Molly and K

As for Sunday, the cleaning craze continued but we did stop to enjoy life a bit too.   Molly called for a play date with Kennedy, which was unbelievably sweet.  Molly is in 5^th grade and tutors Kennedy but K adores her as so much more than a teacher.  The fact that Molly just came to play brightened up K’s day.  They decorated the driveway (which was good because that got K out of the house), made smoothies, played games and were just silly.  After 3.5 hours, K still didn’t have enough of Molly and poor Molly would have kept on going if I didn’t tell her to run for her life.  She’ll be back tomorrow to work with K on lesson plans and Kennedy can hardly wait. 

Maddox rock climbing (thanks Jane!)

I am amazed at how much this disease has taught me.  Before Kennedy got ill, I was living life in a rush and many times I just never stopped to take a look around and appreciate all of the wonderful people around me.  I am a bit ashamed that I never took the time to reach out to neighbors, call old friends or keep up with family.  There is something about disease and illness that makes you see the world differently.  So to all my family and friends, new and old – I am sorry if I wasn’t as thoughtful as I should have been, if I didn’t call enough, introduce myself or keep up with things you found important.  I am so grateful for the support and kindness shown to us and I will do my best to ensure I never get lost in the rush again. 

Much love to all and cheers to many more weekends like this one.  

Days 36 & 37

K and Jax before clinic

Nothing much to report -which is a good thing.  K had clinic yesterday and her blood counts are still good (ANC 5,000+).  Yesterday she finally got to go to Build-A-Bear and made two adorable creatures.  She also got an extra treat of lunch at Rainforest Café, where I made them wash down our chairs and table before we sat down (yes, I’m still germaphobic).

Last night K started her 6mp and of course she gave dad a hard time about not eating for 2 hours before/1 hour after.  I escaped to a much-needed hot yoga class so dad was on duty after 7pm. 

Dad, Grandpa & K 

Today dad was home with K. Dad worked a bit from home and then they had fun doing some arts and crafts with K and grandpa.  Maddox went to work with mom and spent part of the morning modeling HIP’s spring fashions on Channel 7: http://abclocal.go.com/wls/video?id=8575276&pid=8575178#global  Maddox hung out with Christina post segment, I guess she is more fun than mom.  Thank you Christina!  

K’s spirits are up so hopefully this weekend will be a good one!

Day 35

YAY - we are low risk!

Today was the day we got the news we were praying for.  Kennedy is officially LOW RISK!  This is the doc’s first low risk case falling under the new treatment protocol.  He seems excited about it and a passionate doctor can only mean good things for K.  There are two completely different treatment protocols for low risk determined by COG (Children’s Oncology Group). One protocol is LR-C and the other is LR-M (see a summary of both below).  We were randomly selected for LR-M.  The good thing about LR-M is that she will not be treated with any cyclines and no more Peg so the side effects shouldn’t be as severe and long term effects won’t be as risky.  The bad thing about LR-M versus LR-C is that there are (6) 3-day hospital stays for higher doses of IV Methotrexate, the first being next week.  This treatment plan also means no spinal tomorrow – YAY.  There is a 97% cure rate with this protocol.  Here that?  97%!  It is still a 2.5 year chemo program but 97% outshines the next 2 years!!!!!

K and Sofia painting

The plan for tomorrow is to go to clinic and have blood drawn.  This will help the doc determine the dosage for next week’s Methotrexate.  This means we get a quick port pokey and blood draw.  If she’s feeling good, we will be off to Build-A-Bear for the bears we owe her.  Tomorrow she will also start oral chemo Mercaptoupurine (6MP).  The tricky part about this med is that it can’t be taken with food or dairy so getting it down will be our new challenge.

During our meeting with the doc, we also learned her neck/head pain and weekend nausea was probably due to the spinal tap/infusion and that caffeine may have been a quick fix.  Now we know…

Maddox and Molly

So although I should be dancing around, all I want to do is run away.  Despite the good (GREAT) news of the day, I came home to a sick little monkey and I spent the evening rubbing her belly and cleaning puke (yes, again) off the bed.  When I came home from work, Sofia came over for a play date with K.  It started off well, we painted birdhouses but about half way through, K complained of nausea and stomach pain. Sofia spent the last 20 minutes hanging out with Molly and Maddox while Kennedy laid on the couch to have her tummy rubbed.  After a nice warm bath and a 10-minute nap, K threw-up.  This time I called the doc just because I KNEW it wasn’t chemo related.  No fever.  Doc thinks she either overate something that didn’t agree with her or has a touch of the tummy bug.  He’s not worried but didn’t have a quick fix like caffeine for this one.

Maddox being a good big
brother

K started feeling better after throwing up so Maddox fed her some rice (trying to earn some good boy credit after a breakdown earlier).  Dad and Grandpa are off cleaning out the travel trailer…getting closer to selling it.  Hopefully the rest of the evening will be uneventful.

Oh and our canine friend Jaxon is now back home.  He spent the past 2 weeks with Grandpa but K really wanted me home so he has been pardoned.  Yet another child to care for.

Low-risk: Patients are randomized to 1 of 2 treatment arms.

Arm I (LR-M):

Consolidation therapy (19 weeks): Beginning one week after completion of induction therapy, patients receive vincristine sulfate IV on days 15, 22, 78, and 85; methotrexate IV over 24 hours and IT methotrexate on days 8, 29, 50, 71, 92, and 113; leucovorin calcium orally or IV on days 9-10, 30-31, 51-52, 72-73, 93-94, and 114-115; dexamethasone orally or IV BID on days 15-21 and 78-84; and oral mercaptopurine on days 1-133.

Maintenance therapy: Patients receive vincristine sulfate IV on days 1 and 8; oral dexamethasone BID on days 1-7; oral methotrexate* on days 1, 8, 15, 22, 29, 36, 43, 50, 57, 64, 71, 78, 85, 92, 99, and 106; and oral mercaptopurine on days 1-112. Courses repeat every 16 weeks. Patients also receive IT methotrexate on days 1 and 85 (courses 1 and 4), day 57 (courses 2 and 5), or day 29 (courses 3 and 6). Patients then receive course 7 comprising vincristine sulfate IV on days 1 and 8; oral dexamethasone BID on days 1-7; oral methotrexate on days 1, 8, 15, 22, 29, 36, 43, 50, 57, and 64; and oral mercaptopurine on days 1-70. Treatment continues for 2½ years (timed from the date of diagnosis). [Note: *Patients do not receive oral methotrexate on the days that they receive IT methotrexate.]

Arm II (LR-C):

Consolidation therapy (4 weeks): Patients receive vincristine sulfate IV on day 1; oral mercaptopurine on days 1-28; and IT methotrexate on days 1, 8, and 15.

Interim maintenance I therapy (8 weeks): Patients receive vincristine sulfate IV and methotrexate IV over 2-15 minutes on days 1, 11, 21, 31, and 41 and IT methotrexate on day 31.

Delayed-intensification therapy (8 weeks): Patients receive dexamethasone orally or IV BID on days 1-7 and 15-21; vincristine sulfate IV and doxorubicin hydrochloride IV over 1-15 minutes on days 1, 8, and 15; pegaspargase IV over 1-2 hours on day 4; cyclophosphamide IV over 30-60 minutes on day 29; oral thioguanine on days 29-42; cytarabine IV over 15-30 minutes or SC on days 29-32 and 36-39; and IT methotrexate on days 1 and 29.

Interim maintenance II therapy (8 weeks): Patients receive vincristine sulfate IV and methotrexate IV over 2-15 minutes on days 1, 11, 21, 31, and 41 and IT methotrexate on days 1 and 31.

Maintenance therapy: Patients receive vincristine sulfate IV on day 1; oral dexamethasone BID on days 1-5; oral methotrexate on days 8, 15, 22, 29, 36, 43, 50, 57, 64, 71, and 78; oral mercaptopurine on days 1-84; and IT methotrexate on day 1. Courses repeat every 12 weeks for 2 years for girls and for 3 years for boys (timed from the start of interim maintenance I therapy).

During the Maintenance phase of therapy, health-related quality-of-life (HRQOL) measures, parent‘s perception of child‘s health vulnerability, fewer missed days of school/daycare by patients and work by parents, and peripheral neurological functioning may be compared in children receiving different vincristine sulfate/dexamethasone pulses frequencies to systematically assess the impact of treatment.

Blood samples may be collected periodically for research studies and patients may complete quality-of-life surveys periodically.

After completion of study treatment, patients are followed up periodically for 10 years.

Day 33

This morning it was hard to leave the house.  K was a bit nauseated and I went to work leaving her on my bed with bucket in hand, I felt awful.   I left my phone number and Gene’s phone number with K and she finally figured out how to use the phone all by herself. 

Gina and K cooking

The first call was to tell me her neck pain returned and she wanted Tylenol.  I told her to look at the clock and if she still had the pain in 10 minutes, to call me back and I would have Gala give it to her.  Instead she called dad back in 10 minutes and he arranged the medicine with Gala.

Thankfully, the rest of the day got better. Molly came over to work with K on her writing and she wound up painting Kennedy’s and Maddox’s face.  Kennedy had a butterfly mask and Maddox had “Go Bulls”. 

I met with the Red Cross today and we are working on setting up three blood drives at the HIP: one in May, one in June and another in September. I also caught up on some projects I had put off and overall had a good day.

Dad and Maddox at the Bulls game

Dad took Maddox to a Bulls game tonight thanks to his boss Jolie (thank you!).  It was a great time for them to bond and Maddox really needed some one-on-one dad time.  Gina came over to play with K for a few hours and we wound up making cookies, playing a game and creating jewelry.  Around 8’ish Kennedy started feeling queasy so I walked Gina home across the street, gave K a bath and put her to bed.  I finally sat down for dinner at 9 – long, long day!  I miss my boys.

Day 32

Last night remained bad until about midnight.  Finally K was able to keep down some Zofran and she felt normal and was giggly until around 1am until she finally fell asleep.  We were afraid sleep wouldn’t come for her since she slept all day and felt so awful.

K woke up okay but then complained of severe pain in her spine, near her neck.  Again, no fever so we gave her some Tylenol.  After eating a little for breakfast, she was nauseated again so we gave her Zofran and that seemed to help.  She jumped in the shower and hung out there for about an hour.  After all the pukeys yesterday, chocolate ice cream no longer works as a good mixer for her meds so we’ve switched to mint chocolate chip and were able to get her meds down.

Kennedy and Emily and their puzzle

Stephanie came by today with Emily for a play date.  We made cookies, dyed eggs and worked on a puzzle.  It was a nice afternoon and K kept up nicely.  It was nice to see her interact with someone her own age.  She wasn’t as social as she normally is and it took forever for her to actually talk to Emily but finally, they played like kids should.

Grandma came by later and helped me complete my kick of ultimate organization.  Something has gotten into Gene and me, we have started organizing and cleaning like crazy.  I guess it makes us feel we can control something since we feel like we no longer have control of anything.  Gene was installing shelves and cleaning his workroom and I disassembled and reassembled both kid’s rooms along with the basement playroom.  Getting closer to finishing, one more weekend I think.

Grandma and the kids dying eggs

Maddox came home around 7pm from his night with Alek.  They went everywhere – swimming, the movies, out to eat….and the list goes on (thank you Jane, very much!).  It was nice to see Maddox so happy.  As awful as we feel for not spending time with him, we know we can’t compete.  When K is sick like she was the last day and half, the house needs to be quiet.  We know he tries so hard to get our attention but we are so preoccupied, it is hard to give him the feedback he deserves.  It’s also not fair to him to keep him cooped up at home asking him not to be a wild, crazy and fun kid.  Being out and about is the best place for him until the chemo side-effects wear off (hopefully over the next day or so).  

When Maddox came home, K was feeling pretty good.  We all dyed more eggs, he read to us, we read to him and he crashed from exhaustion.  Later in the evening, K complained of the neck pain returning and some nausea so she had another dose of Tylenol and Zofran.  Another big change is that she barely eats, dinner consisted of rice and a piece of bread.  What a change from only a few days ago.

Gene and I both have work tomorrow so K will be with Gala.  Hopefully Thursday's chemo will wear off and K will have a happy, fun and pain-free day.