Going Home!

1 10 2008

Good news!  Maddie’s ANC is up to 102 and she hasn’t had a fever for 24 hours… yippee!  She’ll finish a dose of antibiotics in a couple of hours and will be given a different antibiotic that lasts for 24 hours so she’ll be covered if she spikes a fever til tomorrow.  We’ll be monitoring her closely at home.

We’ll be back on Friday for a spinal tap and more chemo if her counts are at least 500. 

Thank you for your prayers… as always!

All our Love,
The Komatsu Family



Still here!

30 09 2008

So yesterday when it was reported that Maddie’s ANC went from 36 to 1100 overnight – it seemed too good to be true!  Unfortunately, it was.

Maddie went fever-less for almost 24 hours yesterday.  With a reported ANC of 1100, it was just what we expected to happen since her counts were up (supposedly).  All day yesterday, her temperature never broke 100 and we were so prepared to take her home today… but this morning the plan changed.  She spiked a fever of almost 102 at about 8am.  Her early morning CBC showed her ANC at only 37.  We didn’t understand how her counts dropped overnight as quickly as it rose.  That’s when we were told that her ANC of 1100 yesterday was incorrect.  Normally when a CBC is performed, it’s completed by a machine.  For cancer patients, it is always counted manually by a technician.  Her counts were done by machine yesterday morning instead of manually so the counts were off… by a lot.  Thus, her relentless fever.  Spiking much less often, her fever seems to be running out of steam.  She hasn’t had any this afternoon since taking Tylenol at 8 this morning (knocking on wood).  The good news is that Maddie is in very good spirits and is not in any pain. 

We have faith that her counts will suddenly jump tomorrow morning and her fevers will cease (even though we were sure of that for the past 3 days).  I can’t speak for Maddie, but we’re ready to go home – and stay home.  Maddie, on the other hand, doesn’t mind it here at all: a comfortable bed, TV all day, nurses on demand – what kid wouldn’t?  But until then, Maddie’s better off in this castle, I mean safehouse.

Tomorrow is the last day of school before Fall intercession and Maddie is so disappointed she can’t be there.  She really misses school and seeing her friends everyday.  When she saw the cards her classmates sent her, it made her miss them even more.  She told me she’d much rather be in class than be “home schooled” when she’s out.  In a couple of weeks after break is over, Maddie should be good and ready to return to school.  Then she’ll tell me like she often does that she wishes weekends were 5 days long and school days were only 2 days.  Go figure.

Please continue your prayers for Maddie’s body to be strong to weather this storm.  We value your prayers and always need them – and all of you – to get her through this bumpy road!



Admitted for a Fever

29 09 2008

Maddie was admitted into the hospital late Thursday night with a fever of 102.  Her blood culture is negative for bacteria but she has a stubborn fever that continues to persist.  Her ANC was a low 108 on 9/18 and all chemo was held the following week, but nevertheless, her ANC dropped even lower to 75 last Thursday when she was admitted.  It continued to bottom out to 11 the following day.  In subsequent days, her ANC slowly budged to 32 and then 36 with an unbelievable high of 1100 this morning (yaay!).   Dr. Bob said that a lot of times, when the ANC drops as low as it did, fevers are inevitable.  It’s the body’s way of fighting off germs as hard as it can.  But why does she still have a fever when her ANC is up?  Dr. Bob has ordered a blood culture for fungus. Apparently, the huge amounts of antibiotics that she’s been getting through IV for the past three days doesn’t kill those suckers.  Her blood culture for fungus was taken about an hour ago.  I think if it is a fungus, the culture should grow something within the next 24 to 48 hours.  The doc says it’s pretty evident when someone is sick with a fungus since they look visibly ill – but Maddie looks good!  Let’s pray that it’s not a fungus and that this is her last fever so we can break outta here!

We’ll keep you in the loop!



Low Counts

21 09 2008

Long time no write, right?! Take that as a wonderful sign that everything is moving along as it should and that we’re so busy with school and activities that it’s hard to steal enough time to update this blog! Maddie’s been busy with swimming 3 days a week, hula, and has just recently joined a choir!

Unfortunately, today I have the time to write. No sign of any infections but Maddie’s ANC is one of the lowest since she started treatment a year and a half ago. We’ve been a little concerned for the past few months since her ANC has been consistently over 3000+ (too high). We don’t want her to be neutropenic (ANC below 500) since that leaves her body very susceptible to infections, but we also don’t want it too high, which may signify that the chemotherapy may not be doing what it’s supposed to do or her dosages need to be increased again. Her ANC Friday was 108. That’s way below her threshold so all treatment stops until her ANC is at least 500, and we will keep her protected at home as much as possible.

Thank you all for being with us on this long journey. We’re so thankful for all your support and prayers for Maddie for it has sustained us thus far and will continue to get us through the challenges that may lie ahead.

All our love,
The Komatsu Family



Back to School

15 08 2008

For the past several weeks, Maddie kept wishing for summer break to end so she could go back to school (I may never hear that from her again!).  For the first time, she was excited to return to her friends and hopefully a little more ‘normal’ year than last.  Her first week of school went well, getting back into the swing of things – including going to bed early and homework.  But she didn’t care about all that stuff.  She was just happy to be back at school.

She received her once-a-month dose of Vincristine, Pentamadine and Dexamethasone the previous Friday which brought with it the normal bone pain, moodiness, and appetite.  It also brought low-grade fevers which wouldn’t stay away.  She was brought home from school early on Monday with a fever of 100.4.  Her temperature never hit 101 so we didn’t have to take her in to the hospital.  She felt well enough for school on Thursday but again was brought home with a 100 degree temp.  Her ANC is sky-high at almost 4300 since she just completed a course of Dex, but maybe that’s what kept her body fighting something off this week!

Please pray for a better week for Maddie and for her body to continue fighting off the germies!



Happy 4th!

7 07 2008

view from Ilikai balcony

Maddie has been doing better than we could have ever wished for since her port was replaced. She’s been infection free and her counts have been consistently high. She’s been eating well (as you can see) and has been spending most of her summer break swimming so she is so papa’a! Maddie is scheduled for another spinal tap this Friday as long as her counts are sufficient. More than likely she’ll clear since her counts were really high this past Friday:

White: 2.7
Hemoglobin (red): 12.9
Platelets: 373
ANC: 2368

Hope you all had a great 4th and felt adventurous enough to catch one of the many fireworks shows on the island. We stayed at the Ilikai Hotel with cousins Skylar and Sierra and were lucky enough to have an awesome view and watch the fireworks show from the room! It was so relaxing (somewhat) to not have to hunt for parking or brave the crowds in the summer heat! We also took the kids to watch the penguin feeding at the Hilton Hawaiian Village, which was neat because the penguins stand in line to eat according to their ‘senority’. Too bad the kids can’t learn a ‘pecking order’ too (I wonder if the penguins would grumble if they could talk?)…. One penguin was even brought up close to us – about 3 feet away – and let us pet his back! We paddled a kayak in the lagoon while Maddie and Trevor took turns catching a ride on their boogie board. We can’t wait til the 4th of July next year! Here’s the latest pics…

(Click on each pic to see the full image)



Little Rock Band

29 06 2008

We must be driving our neighbors nuts, we’ve been playing Rock Band almost every day since we got it last week Thursday. Janelle is a terror on the drums and Maddie is a strong singer and can also hammer the drums like Sheila E. Trevor and myself are trying to master the axe. Here is a video of Maddie and Trevor playing Rock Band Wii, enjoy!

kids_rock_band08



You Have Mail…Maddie!

19 06 2008

Maddie is on her way to being computer literate like her uncle Chris. You can now email Maddie at: madison.komatsu@gmail.com



Back from Camp!

16 06 2008

First of all, Happy Father’s Day to all you dads out there. As you all can agree to, being a parent is not easy! And today, we thank you for all that you do for us, and for being the amazing men that you are … we love you dads!

After being away from home for 7 whole days, Maddie’s home! Our house was so quiet without her… we missed her so much! Even Trevor kept asking when she was coming home. By Thursday, I was missing her so much that I went through old pictures and got teary-eyed. Because we had no contact since last Sunday, I wondered how she was doing and whether she was homesick. This was her first time away from home, and it was for a whole week! After pulling myself together, I saw a postcard that she sent us from camp:

That was exactly what I needed that day… how’s that for perfect timing! I knew Maddie was having a great time and wasn’t homesick at all.

The counselors said the girls had a GREAT time, dancing and singing the whole time. Maddie even got a certificate for being an “Outstanding Camper” and was nicknamed the “Dancing Princess”! There were 5 girls in her cabin ranging in age from 7 to 9, and what seemed like a counselor for each girl. A video of the entire experience is being put together for families, but will not be ready until November. I am so anxious to see it! They had campfires, swam (a lot), painted boxes for their daddies, had a talent show, played games, and even had a dance where Paul Brown came to camp and prettied up all the girls – painted fingernails and did hair! They got to choose from the camp “closet” which beautiful dress they would wear to the dance that night. There was a even a zip line that they were a little hesitant to try but didn’t… they may feel adventurous next year! They learned fun camp songs and even sang a couple of them for us – but most importantly, the kids meet other kids who have gone – or are going through – the same thing that they are! They feel “normal” for that one week at camp … just watching the kids, we knew this was a week they will never forget. From the first night, Maddie said she’ll be back next year, and every year after that. There were so many volunteer counselors, some who came all the way from the mainland just to participate in this camp, and others who are survivors who came to Camp Anuenue as kids and now want to give back. Doctors, nurses, family members of kids who have lost their battle with cancer. All of them there out of love and compassion. Amanda, one of Maddie’s counselors, said she went to a class at her college where a teacher told them about Camp Anuenue and she decided to fly here to experience it herself. She said she’ll be back next year too. What a great experience and opportunity for kids who have been through so much…. Thank you Camp Anuenue, for everything!!



No News is GREAT News!

11 06 2008

It’s been a while since my last post… a long while! Well, everything with Maddie has been pretty smooth and she has been doing excellent with this new port. She’s had no signs of infection since and has been in wonderful spirits and has tons of energy! Here’s some pics of a few of the things Maddie and Trevor have been busy with since my last update in April…

****** AT THE BEACH.. AND THE ZOO ******

****** A LITTLE GIRL NAMED HAILEY WITH A BIG HEART ******

There’s a young lady named Hailey Silva that wanted to GIVE a special gift to someone else for her 7th birthday. Here’s a message from Hailey’s mom…
“Wanted to share mostly Hay’s bday gift she gave this year..all on her own! We were so proud of Hailey. She stuck to a wish she had when she was in kindergarten. She wanted to grow her hair long and donate to the locks of love foundation. We did this in honor of a little girl named Maddie. Hailey has never met Maddie, but knows of her story and fight with leukemia. Maddie was diagnosed w/ this at age 5. So for a special wish and gift this year…Hailey thought it would be a nice idea to help someone else!
The tears were flowing as she cut her hair..the whole salon even clapped for her when it was done! What a touching and emotional gift!
Of course after all the hoopla..all Hailey asked for was dinner AT McDonald’s…..simple kid!!”

Thank you Hailey for your gift of not only your beautiful long hair, but your gift of compassion and kindness. Instead of choosing a gift for yourself on your birthday, you chose to GIVE a gift to someone in need. The lucky person who receives your hair will be so happy and will always be thankful to you too. We’ve never met you before, but you are growing into a young lady who we will always remember for what you have done. You are as beautiful on the inside as you are on the outside with your cute haircut!

****** KEELY (MADDIE’S BFF) SLEEPS OVER! ******

Maddie and her friend from preschool, Keely, have been inseparable! Now that the girls are older, they get to spend more time together. They don’t get to see each other everyday since Keely has been going to Kaneohe Elementary since Kindergarten, but they get together every chance they can. Keely will be attending Le Jardin school in the Fall for 2nd grade … congratulations Keely!

****** PENNIES FOR PATIENTS *****

Maddie’s school raised money in Pennies for Patients (for the Leukemia and Lymphoma Society). Her 1st grade class raised the most money and won a pizza party on the last day of school! Thank you to all of you who contributed your spare change (and dollars!)

****** BYE BYE 1ST GRADE…. HELLO SUMMER! ******

Maddie’s hard work pays off! She finished 1st grade with almost straight As (except for an S+ in penmanship!) She took her first SAT test this year and did AMAZING … I’m so proud of her that with all she has to deal with outside of school, she doesn’t miss a beat when it comes to learning!

****** ARTISTS IN TRAINING ******

You all may not know this, but Nana is a wonderful artist. She loves gardening and nature, and so art comes naturally to her! She has been teaching Maddie to follow in her footsteps, and now Trevor is starting to enjoy art too!

****** MOTHER-DAUGHTER TEA and GIRL SCOUT COOKIE AWARDS! *****

Maddie and I had our first Mother-Daughter Tea Party with her Brownie and Jr. Girl Scout sisters and their moms. The Tea Party was at the beautiful Girl Scout Hale in Nuuanu, and all the girls looked georgeous! Before the tea party, the girls learned proper table etiquette and manners – they did a pretty good job too! The girls also received awards for their cookie sales. Although falling a little short of her crazy goal of 2000 boxes, she sold a total of over 1200 boxes and not only earned Priceless (over 700 boxes sold), but earned her way to the Cookie Hall of Fame! This was made possible by kind and generous friends, some who donated money for cookies to be sent to troops overseas, and others who bought cookies for Maddie to hand-deliver to kids at Kapiolani Hospital.

Maddie was an honored guest at the Girl Scout “Priceless” event for girls that sold over 700 boxes. The girls were treated to a special lunch catered by Diamond Head Grill and went behind the scenes at Diamond Head Theater to see how and where the actors and actresses get dressed and see all the sets. They came home with goodie bags filled with make-up and lots of other good stuff.

Being a first-timer, cookie selling was a wonderful experience for Maddie – one that she will get even better at next year… and the year after that! Thank you to all of you – whether you bought cookies for yourself or were kind enough to buy them for others – get your freezers ready for next Spring when it’ll be cookie time again!

****** TREVOR GRADUATES! ******

from preschool, that is… Trevor did well on his report card too (except for taking a nap and sitting quietly… no surprise there!) We are so proud of his accomplishments and will continue to encourage him. Our little man is growing up… He’s on his way to Kindergarten!

****** MADDIE GOES TO CAMP *******

Last, but definitely not least… Maddie is away at a one-week camp right now. It’s sponsored by the American Cancer Society and is called Camp Anu’enu’e. The kids are either currently in treatment or have completed treatment already, and have to be at least 7 years old to attend. Maddie just turned 7 the day before camp (HAPPY BIRTHDAY MADDIE!) and was ecstatic that she could go this year. She heard about the camp last June when she was in the early stage of her treatment. All the kids that go seem to LOVE it and so do the doctors and nurses too.

We dropped her off at Camp Mokuleia (so far away from us!) this past Sunday and won’t see or hear from her til this Saturday! It was harder for me, Scott and Trevor than it was for her. She’s never been away from us except for when she’s with Nana, but didn’t seem sad at all as we gave her a big hug goodbye at camp. She is at camp with Addie, her Brownie sister and friend who also turned 7 and just completed treatment for Leukemia in March. They must be having a blast with no parents for a whole week! I took a few pics when we dropped her off on Sunday:

Whew… we had a lot of catching up to do! We’ve been so busy, but we’ll try to update more often. If you’d like to be alerted when this blog is updated, scroll all the way down to the bottom of this page and click on “RSS Blog”. Feel free to let us know what you’re up to too! :0)