Our Sweet Angel

Our Sweet Angel

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!!

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