Friday, March 30, 2012

Days 56 - 58

I stayed home on Wednesday to stay on top of K’s pain.  We kept the ibuprofen and Tylenol going all day and thankfully had no relapse of Tuesday night. Thursday, dad took K to clinic and celebrated the end of steroids (for now) with a trip to Build-a-Bear and Rainforest Café.  K’s counts are good so she can have play-dates.  Her weight was up 3lbs from last week from the steroids but it should come off before her next round.  She also got a green light to go to a somewhat empty movie theater – which is what we did today.

The pain was intermittent over the last few days.  Last night was probably the worst of it.  Kennedy has been sleeping in our bed so Gene and I have been taking turns sleeping in hers since K is an active kicker.  Last night dad got to sleep with K and she kept him up all night with leg pain.  Thankfully by the morning it was gone.

When dad left, I hopped back into bed with K which is where we stayed until 11am today.  Later Sofia came over and the four of us - Kennedy, Sofia, Maddox and Me went to see the Lorax.  Maddox stayed home from camp today to hang out with mom and plus, he was exhausted from 4 non-stop days of camp and late bed-times.  After the movie, Maddox took a nap, Kennedy and Sofia slept and I did some work.

So far the day has been a good one for Miss. K.  Below are pics from the last few days.  It’s hard to stay on top of posts lately.  I’ve seemed to develop sympathy pains for K and my hands and joints are killing me out of the blue...weird.

Tuesday, March 27, 2012

Day 55

For a day that started out good, it ended with Kennedy screaming in pain for nearly an hour. 

The back pain that plagued yesterday subsided enough in the morning that we almost forgot about it.  K had an hour play-date with Jackie from 9:30 – 10:30 in the morning.  Gene and I both went to work and I headed downtown to have a lunch meeting with an industry colleague (thanks Erica!).  Throughout the day, K would call me and tell me she was nauseous or had pain but it was all manageable, nothing that lasted or was extreme.  Gala didn’t know about half of the calls but K called me at least 7 times between 12 – 4.  We had a lot of mommy-daughter chats throughout the day.

I got home a little before 5 and gave K some Tylenol and we took a nap together.  When Gene got home, we both got ready to go to a much-needed hot yoga class.  All seemed well so we left K sleeping.  Gala and grandpa were at home to watch her.  When we got to the yoga studio, Gene got a call that K was in severe pain and wouldn’t stop crying so we left before the class even started. 

When we got home, I gave K her meds – Dex (steroid), Ranitidine (stomach) and some Tylenol with Codeine (pain).  She seemed okay; we were massaging her arms and legs and applying ice.   Then all hell broke loose.  She started screaming in pain.  She thought warm water might help so I jumped in the shower with her but the pain didn’t stop so Gene took her out and held her.  She started screaming at the top of her lungs and it didn’t stop for nearly an hour and there was nothing we could do.  Her arms, legs and back hurt.  She couldn’t walk. I guess this was phase 2 of yesterday; all she could do is clench, hold on to Gene and scream.

We paged the doctor who called back to tell us this was all normal.  Really???  Normal???  All the while we were on the phone she heard Kennedy screaming and crying at the top of her lungs.  The only relief she suggested was aspirin.  She noted that the Tylenol with Codeine wasn’t helping the Dex pain, only the Vincristine pain.  The aspirin should help the inflammation caused by the steroid.  We have no children’s ibuprofen in the house because it is normally a no-no with chemo but since her platelets were okay at the last visit, she approved it.  I ran out to CVS while Gene stayed with a screaming K.  I was probably gone 15 minutes and when I came back to the house, she still hadn’t stopped.  It was hell for her, for us.

When she was able to calm down enough to take the ibuprofen, it helped enough to buffer the pain and now things are a bit more normal.  I’m still worried about later tonight and tomorrow, especially after we have to get her the Dex.  She has one more day of this round of steroids and I hate that I have to give it to her.  I asked the doc if it was a must and I was told “yes” – it’s part of the “cure”.  I’m scared for tomorrow if this was the reaction today. 

It’s amazing and terrifying to think we are only on day 55 and there are 857 days of treatment left (my calculation in an earlier post was incorrect).  I hope today was the worst of it.   One day at a time.

Monday, March 26, 2012

Day 54

Today sucked.  Gene and I went to work and got a call from Gala around 11 that K had back pain.  We had Gala massage K’s back for 10 minutes to see if it would help and then by 11:20 had her take some Tylenol.  Nothing helped and the pain seemed to gradually get worse during the day.  We are never sure how to react because at times she gets a flash of pain that lasts 15 minutes and then disappears as quickly as it came.

By 1:20,  K was just miserable.  Dad paged the doctor.  In the meantime we had Gala apply some ice, which alleviated some of the discomfort.  When doc called back, he told Gene this was common from the Vincristine and could also be the Dex.  He asked if she could still walk (I guess this could lead to that???).

I left work at 3:15 to go home and see what I could do.  That damn pit in my stomach rages when she’s in pain.  For her next round of Tylenol, I tried the one with codeine.  We also tried a warm bath.  Eventually, she just passed out.  When she woke up, her eyes were all glassed over and she complained about slight pain but nothing as severe.  Hate codein but it helped tonight.

This evening was more of the same but by 11, she seemed much better.  A full 12 hours of misery for our pumpkin.  The steroids haven’t helped matters because they make her angry and she can be really mean.  Of course I take it personally when I shouldn’t and the pit comes back.  I know she can’t help herself but it still hurts.  Thankfully Maddox was the perfect big brother to her tonight.  He helped where he could and even held her hand to listen to her. He put up with her anger and bossiness very well.

If only today could have been like yesterday.  Cousin Nicole and family came by for brunch and K played the day away.  We even stopped by Jane’s house for a quick playdate at night with Jackie.  All was well – who would have thought things could change so quickly, especially when she didn’t have a treatment or change of meds in days???  Hopefully tomorrow will be better.

Saturday, March 24, 2012

Days 51 & 52

Kennedy has not been 100% and we’ve been reminded again about how fragile this treatment makes her.  Her mouth sores have subsided but the last few mornings she’s been pretty nauseated and it takes a lot of coaxing to even get the anti-nausea medication down.   The nausea returns several times a day.

Medicine has also been a pain.  We went from 2 weeks of only 6MP and weekend Bactrin, back to 3-5 meds twice daily.  We added the dex (steroid), along with the ranitidine (it helps her stomach when she’s on the steroid), add that to the weekend doses of bactrim, 6MP and the anti-nausea meds, it’s amazing we can keep it all straight.  This round of steroids really seems to change her personality which complicates things even more when it comes time to convince her to take all of the above.  Thank goodness the steroids end on Wednesday – we’re half way there.

This was my pic for K to prove
I really did get a pokey
I finally got my pokey and made Kennedy happy.  After TRX class today I donated blood at the Y with Life Source.  Although they aren’t my favorite company, the cause was great so I went for it.  This was the first time I donated blood because I have always been a big chicken about needles.  As I went through the process of having my finger poked and giving blood, I thought about all the times Kennedy has been poked and it it made me want to cry.  Thankfully it also made me much stronger about donating.  As I’ve said before, my strength comes from K.
Also showed K that Nicole,
Maya's Mom also got a pokey.

 Kennedy used to take a dance class with a little girl named Maya. Her mom Nicole, who takes TRX with me, also donated for the first time.  I knew it wasn't her thing, especially since she is planning on running an 8k tomorrow and she had both of her little ones with her, but she did it anyway.   I didn't ask but I knew she did it for K.

Lastly, I resolved my BCBS issue on Friday.  After the Thursday call with the insurance company, I contacted the supervisor of the girl I spoke with and asked to have a caseworker assigned to me that has children so she could be more sensitive to my situation.  Lucky me, the same girl called me back to apologize and then asked a ton of questions about K's height and weight, type of meds she was taking, etc.  She told me her purpose was to help me through the process.  When she was done asking me questions, I asked her where I was at in meeting my deductible for out of pocket expenses and she had no clue but said we could call customer service together.  Back to the beginning, what is the purpose of this again?

The insurance liaison from Loyola also called on Friday later in the day after Megan (the Child Life Specialist) read my blog and told her about my situation.  She told me I do not have to talk to the BCBS case worker and that she handles all pre-approval insurance matters and will help me with my insurance needs if any arise.  What a relief.  Now I can avoid those crazy calls and worry about more important things, like K.

Thursday, March 22, 2012

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 :)

Wednesday, March 21, 2012

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.

Tuesday, March 20, 2012

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.

Sunday, March 18, 2012

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

Saturday, March 17, 2012

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 2nd 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 1st 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!

Thursday, March 15, 2012

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).

Tuesday, March 13, 2012

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 4th 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.

Sunday, March 11, 2012

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 5th 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.  

Friday, March 9, 2012

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:  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!

Wednesday, March 7, 2012

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

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.

Monday, March 5, 2012

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.

Sunday, March 4, 2012

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.