Our Sweet Angel

Our Sweet Angel

Thursday, October 27, 2011

The "Toughest" Little Princess - Laughter is the best Therapy

We had to share these amazing photo's of Carmen and Trevor.

These images made my heart skip a beat.      

Auntie Aly has been showing off her Face Painting talents.....which is surpassing Daddy's.

Live, Love, Laugh

Carmen and Trevor - Butterful Kisses


Tuesday, October 25, 2011

Jacquie, Cici and Nani....thank you

Turning 40 is such a wonderful milestone in our lives...

It's the beginning of the best for some, some feel over the hill.  We are all having babies a little older these days.  Most of my best mommy friends are 40 or have turned since having our babies 4 1/2 years ago.  I felt turning 40 last year was the best time of my life.  I like and know who I am more than I ever have.  I love my family and friends more than I ever have.

40's are truly FABULOUS!  

And from my "wiser" friends I know it only gets better from there...

Childhood friends Cici, Jacquie and Nani just celebrated their BIG 40 on Oahu where they grew up together.  Jacquie has been doing healing touch with Carmen right since her diagnosis.  I met Jacquie through Cici who's little girl Abby goes to preschool with Carmen and Trevor.  Cici and Marau, Carmen's teacher organized the fundraiser bracelets for Carmen.  

"Smile and be happy, I love Carmen"

On their birthday invite they wrote;

"Your friendship is the best present; however if you would like to give a gift please consider a card of encouragement or a donation in our calabash for our dear four-year-old friend Carmen (http://carmenleolaniwhite.blogspot.com) who was diagnosed with leukemia in May."

I have never even met Nani, but I know these three women are all beautiful, stronger than steel and their charity and humanity is endless.  I am again so blown away by your kindness toward our family and do not know what we would do without you.

Mahalo Nui Loa
Team White

Sunday, October 23, 2011

It's only hair...


It has been a long time since our last post.  Many things have changed.  

I have been on the Big Island since September 25th and have been at the new job for almost a month.

Things are going great.  I am loving the new job - and - missing the family terribly.  

Team White was back together last weekend, when I traveled to Kauai for a few days.   Heather and I know this will all be great in the long run....but.....it is extremely difficult being apart.  Especially....with what is going on with Carmen.

Auntie Aly has been a tremendous help to our family and I do not know how we could be doing this without her.  We thank you from the bottom of our hearts and will be forever grateful of this time you are spending with us.  You will ALWAYS have a place to stay with us!

Carmen began Delayed Intensification on October 3, 2011 (day 1).  The doctors readied us it would be as intense as her very first round of Chemotherapy which was called "Induction."  They said this would be very difficult on our family and on Carmen.  And warned us, "If she still has any hair, it will go with this round."

Carmen is staying vigilant in her fight.   We mentioned in earlier posts what was in store for Carmen's body during this phase.   The only way for us to really share the reality of these chemical treatments is to list you her protocol, below;

Dexamethasome - Days 1-7 & 15-21
VinCRIStine - Days 1, 8, & 15
Doxorubicin - Days 1, 8,  & 15
Pegaspargase - Day 4
Cyclophosphamide - Day 29
Thioguanine - Days 29-42
Cytarabine - Days 29-32 & 36-39
Intrathecal Methotrexate - Days 1 & 29

She is also on an anti-fungal for thrush and an antibiotic to protect her from pneumonia.

October 24th is treatment day 22.  There is 56 days total so days 39-56 are essentially "rest" days.

Carmen and Heather were on Oahu 4 days the first two weeks of October.  They are home for this coming week and Carmen is finished with the steroid...finally!

I know the names of these drugs do not mean much to you but they are easy to research on-line, allowing you to fully understand what this beautiful, little four year old is going through.  It is enough to bring all of us to our knees.

It is next to impossible for me to try to explain to you what it was like to Skype with my beautiful daughter today and see her with chubby cheaks, tired and losing her hair is clumps.  This is the same TLP who was running, jumping and dancing only a few weeks ago.  I know the doctors and chemotherapy are curing Carmen but the whole things seems incredibly cruel and unfair.  Heather anticipates that Carmen will lose all of her hair by the end of next week.

As always, Carmen finds the will and energy to give her Daddy a big smile, little laugh and showing that little sparkle in her eye.  

And to Heather....my rock-solid soul mate.  Always giving your best.  Keeping Carmen and Trevor smiling and having fun.  Your ability to keep it together through all this is truly inspiring.   

We decided to make this move to the Big Island for the long term benefit of Team White.   Heather and I, know we made the right decision but being apart from family during this time sure seems wrong right now.

Okay.....so there is great news to share too.

Trevor is the same little fire cracker as always...keeping everyone busy and laughing.  He is going to school, while Carmen stays home, enjoying every minute with Auntie Teacher and the gang.

Carmen's numbers are staying high, despite what the doctors warned.   Heather is highly optomistic that Carmen will clear day 29 and stay on track to complete this phase on time.

Carmen and Heather will go to Oahu 8 out of 11 days between Nov 1st-11th.  Aly will be holding down the fort and caring for Trevor, Roxy and the house.

Carmen, Heather and I will be coming home on November 4th, with Auntie Julia and Uncle Scott who are coming on their honeymoon from Ontario.   Then I will be joining Heather and Carmen in Oahu for one of their extended visits to the PAU on November 8th.

We are looking forward to welcoming Auntie Judy and Uncle Chris mid November.

Grandma White still needs to send us pictures but we would like to thank the Rotary Club of Huntsville Ontario for their generosity and support.

And....to all of you.....Mahalo for your love and friendship.

Love Team White

A few images images

Auntie Aly's 25th Birthday Celebration!

Carmen's favorite visitor in the PAU

Carmen at the tail end of her steroids.

Art fun outside!

The nurses and doctors can't believe how long Carmen held on to her hair...
Some people have asked how she is reacting to the hair falling out and she does not really know.  I am not reacting to it but am telling her, "Your hair is coming out to make room for new-improved hair."  "Like when you loose your teeth and get new ones!"
I have been telling her since June she was probably going to loose her hair, we do not have very many mirrors around so I do not think she really notices or cares which is great!  It's for sure harder on Mommy and Daddy.

Last photo of this particular pony tail...there will be more!

 An amazing book Carmen was the creative director of and daddy put it on paper for her

 Megan and Kaitlin from Ontario are now making lovely book mark to raise money for Carmen.  These young women are truly filling up their karma basket! 

We love you!!