Carmen Leolani White

Sunday, October 23, 2011

It's only hair...

Aloha,

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!!

Sunday, September 25, 2011

A New Chapter Begins

Tomorrow officially marks the beginning of a new chapter for Team White. I leave for the Island of Hawaii to begin my new position with the Four Seasons Resort Hualalai.

Heather, Carmen and Trevor will remain on Kauai until December 1st. I will be traveling back to Kauai at least three times before the full move.

The last three weeks have been an incredible blessing. I have been off work, in transition, for the entire time. This has also been a down period in Carmen's treatment. We have been able to spend the last three weeks just having fun and enjoying this wonderful island of Kauai before we leave for the Island of Hawaii.

There have been a few going away parties to say farewell to our extended ohana here on Kauai.

We spent a night at the Grand Hyatt Resort, enjoying their amazing pools and Carmen was able to ride the "big girl" water slide.

The highlight of the three weeks was spending two nights at this amazing place on Kauai called Waimea Plantation Cottages. The entire resort is made up of several rustic seaside cottages that used to be homes for plantation workers for the Sugar Cane industry. It was so quiet and peaceful, full of laughs and fun.

The first week hiatus in Carmen's treatment has been amazing. She has completely bounced back to her old self. Quick to laugh and full of endless energy. Her numbers have all been terrific and Carmen is as strong as ever. All of this is perfect timing to prepare Carmen for the beginning of her next phase of treatment on October 3rd called Delayed Intensification, which is expected to be difficult on Carmen. The Doctors refer to this phase as a "re-shock" to Carmen's system to emulated the first 30 days of Chemotherapy. The leukemia cells are smart and will adapt to the chemotherapy treatment, therefore the theory behind Delayed Intensification is to outsmart the Leukemia Cells and blast them into submission.

It is unbelievably painful for Heather and I to see our little daughter back to her old self but knowing what is about to happen to her over the next 56 days.

So far, the Tough Little Princess has fought through this with courage and we are confident that she will do the same for this phase.

Of course it is painful knowing that I will not be here for Heather for the majority of this difficult phase but we are looking forward to welcome several visitors over the next few months. Cousin Aly arrives on September 29th and staying to November 20th. Julia and Scott arrive for their honeymoon on November 4th and we just got news that Uncle Chris and Aunt Judy arrive on November 13th and will be staying to December 10th.

Tonight we were having a nice dinner before the trip to the airport tomorrow. Carmen disappeared from the table and returned a few minutes later. In the palm of her hand was a little Angel coin that her Auntie Debbie gave to Carmen to watch over her. As the incredible giving and beautiful little girl that she is, Carmen opened her hand, looked up at me and said, "Daddy....here....take this angel. She will watch over you when you are on the big island and I will always be around you". Then she grabbed my cheeks and gave me a big kiss and hug, saying, "Daddy...good luck.....I love you". Oh my.....not a dry eye in the house when she said it or now that I write this.

We feel so blessed and fortunate to have such incredible support from our loved ones. Thank you to all.

Images and Videos

Daddy sunbeams!

Wow! A photograph of mommy!

Go for it Trevor!!!! Such a funny guy.

Our seaside cottage at the Waimea Plantation Cottage.

The Kiddo's at the Waimea "Candyland" - as they heard it.

Seeing a natural wonder and sad there was no Candy. "Where is Candyland"

Waimea Canyon, Kauai

Cheeeese

So happy!

Having fun at Jo Jo's Shave Ice

Sharing...

Shaka!!

Shave Ice at Jo Jo's

A Kauai institution

Beach Dancing

Tossing it back

Daddy....I have a crabbie in my mask

Living the life of leisure

Monday, September 12, 2011

A Day that Changed it All

While I begin to write this post for my daughter it is impossible not to think of the lives that were changed forever 10 years ago today.   This blog post is dedicated to the ones who lost their lives on September 11, 2001 and to the police, fire and first responding survivors who's lives have been changed forever. Our thoughts and prayers go out to the family and friends who lost loved ones on that day and since. Most importantly, we pray for the brave men and women of the armed forces who have lost their lives and continue to fight for our freedom, allowing our children the privilege to live a life that they are not able to.

Aloha everyone,
We have some big news to share with you.   It is unexpected and somewhat surprising even to us, to announce that we will be leaving Kaua'i and moving to the Big Island of Hawaii, early December 2011.

I was offered a terrific opportunity to be the Director of Marketing at the Four Seasons Resort Hualalai, located just north of Kona ( www.fourseasons.com/hualalai ). There are many beautiful resorts in the world, including the St. Regis Princeville Resort that I was working for, but there are some resorts that are truly best in their class. Hualalai is one of these resorts. This is a fantastic opportunity for me to grow my career, while at the same time allowing us to stay in Hawaii continuing Carmen's treatment at the amazing Kapiolani Hospital.

This move will not change much regarding inter island travel and still requires Carmen and Heather to make the journey back and forth from the Big Island to Oahu. However, the Big Island is still a relatively small community providing us with more control over Carmen and Trevor's exposure to a big city, large groups of people and a healthy environment - which is still critically important to Carmen's recovery. Although not impossible, it is something that would have been more difficult had we moved closer to the hospital on the island of Oahu and Honolulu.

Of course, there is the incredibly sad side of this move. Leaving a community that has provided so much to Team White over the past 3 and a half years is hard to imagine.

We have been honored by your Aloha. The word Aloha is the purest word that can be used to define the unconditional love, support and devotion that all of you have provided to our family since May 26th. We are incredibly fortunate to have experienced Aloha in all its glory and are stronger because of it.

It is important for us that you all understand the decision to leave Kauai was incredibly difficult for our family to make. Only time will prove if this was the correct decision but so far, Team White has done pretty well and need to follow our path as a strong team - wherever that path may lead.

I will be moving ahead of the family, leaving for the Big Island on September 25th. Heather, Carmen ,Trevor and Roxy will be following in early December to allow Carmen to complete the next phase of her treatment called Delayed Intensification, which will be the toughest part of these first six months.   It is expected that Carmen's numbers will drop significantly, preventing her from going to school during this period and making it impossible to facilitate a disruption, let alone a move. I will be traveling back to Kauai several times during this time and our cousin Aly Thompson will be arriving on September 28th, staying to November 21st to help Heather. Julia and Scott will also be on Kauai for their honeymoon, November 4th to 12th.

Heather and I have been drawn back to this wonderful island twice already, which is why we feel comfortable knowing that this is not good bye.   A Hui Hou, Aloha and Mahalo to all of our special friends of Kauai.

For those of you on Kauai, we will be having a Get-together, Open House style party on Saturday September 17th from 2pm to 7pm. Please stop by 4130 Kekaulike, Princeville. We would love to see you.

The Kauai Marathon was last Sunday. We would like to thank Auntie Teacher and Cee Cee for their support while running in Carmen's honor.   Congratulations to Auntie Teacher for finishing with the amazing time of 4:20!!!! (I am not sure how fast Cee Cee ran but I am sure it was great)

Carmen's appointment on Tuesday of last week included a sedation with a lumbar puncture and chemotherapy. There was the usual fight to access her port (I don't blame her) but mostly no tears...and no need for a child life specialist to come and help as in the early days. Mama says, "I got this!" Sad that sweet Carmen is getting used to hospital procedures. She had a great week and was feeling awesome and able to attend school which is wonderful! She will go to Oahu the end of this week for day 41 of Interim Maintenance, Phase I and then will have a break for two weeks until starting Delayed Intensification when her blood work clears around the first of October.

Below are a lot of images to keep you updated.

Carmalita Ballerenia

Arrrrggghh.......Billy.

Tough Little Princess

This was the first time Carmen let me face paint her since returning from the hospital

These are the amazing wrist bands that Auntie Teacher and Auntie Cee Cee organized for Carmen. All proceeds from selling the bands goes towards Carmen's recovery.