California Dancing

Another great week for Team White.   Each day better than the last for sweet Carmen.

After three weeks of declining ANC levels, Carmen's results jumped back to an incredible 4009 ANC, up from 1820 last week.  All of this is happening at the most amazing time as the start of pre-school approaches on August 3rd.  Trevor will be joining Carmen this year to make up the brother and sister dynamo at Waikiko Kids.

Reflecting on the last two months it is staggering to even think of the progress Carmen has made.   The fact that we are even considering Carmen gong back to pre-school with her friends and the amazing environment of Waikiko Kids is incredible.

Auntie Kristal, Uncle Erich and Uncle Lance arrived this week.  It has been amazing having them here visiting and so great for Trevor and Carmen to spend time with family.  The days have been action packed and a lot of fun.  Yesterday the gang, minus the kiddos and Daddy, went on a catamaran trip down the Napali Coast.

Tonight, July 30th, is The Relay For Life in Hanalei.   Starting with the survivor & fighters lap at 5:30pm - which Carmen will proudly walk.   At 7pm the Luminaries will be lit, which are personally designed paper bags with candles, to line the track in support of the survivors and fighters.  We all painted our bags yesterday with our own special twist in support of Carmen.  The St. Regis has a team in the Relay and we will be spending the night making sure we have someone on the track from 6pm to 6am in support of the survivors and fighters of Cancer.

Below is an amazing video of Carmen dancing to her favorite song.  Plus a few images of the week.

May I have this dance.  California Girls "Represent"

An amazing creation by Trevor.  We are not 100% sure what it is but every line has a story

The Floating Family Kayak Circus

...and here we go.   All returned safe and dry.

Time for a little "exterior" decorating

Trevor's First "real" Hair Cut.  With the Surfer Dude "Swoop" with just the right amount of hair product

It's a Spa Life.  Mahalo Auntie Ash!!

Sister and Brother at work.  "The day's last creation"

Ontario Benefit for Carmen White

We would like to express a huge Mahalo to Julia and Scott for hosting the Friends of Carmen White benefit event at their home on Sunday July 17th.

With the wonders of technology and Skype it was nice to be able to see everyone's smiling faces enjoying the festivities in the sweltering 100 F (40 C) degree heat.  80 people, a band, face painting, games, food and beverage made for a fantastic day.

Quite honestly...the entire expression of generosity is completely overwhelming to us. 

With warmest Aloha and Mahalo, Heather and I would like to say thank you to everyone who attended this special day;

Cathy Hall, Larry and Robina Smith, Nancy and Bill Mozina,  Sarah and Dave Whitty, Lorraine and Darrell Randell, Kent and Josie Myles, Don and Bonnie Gale, Jane and Greg Smith, Dave and Valerie Terman, The Symon family, Henry & Marlene White and family, Tailor Straicher, Glenda Lee, Ariss Family, Gordana  Cado, Jeffery Hall, The entire Brooks family, Stan and Dora and family, Lynn Mountford, Sharon Sherk, Darren Scott, Bill and Michele Mactaggart, Gaye Musselman, Tracey Groom, Karen Dewar Birk, Jason Lee, Denise MacDonald, David Deichart, Heather Dayman.   (I really hope I got everyone....I apologize if I missed you).

Gaye....we will see you in Kaua'i!!!!

All I can say to everyone is that all of our prayers are being answered.  I know you must feel that being so far away from Carmen is difficult but I can assure you that you are making a difference everyday.  Your love and support is flowing directly to Carmen and giving her the strength to beat this disease.

Carmen is nearing the end of her 28 day Consolidation phase with her last lumbar puncture for a little while.  This weeks results were once again amazing.   Carmen's ANC result was 1820!!!!!  This is still a fantastic number but has decreased three weeks in a row - caused by the new chemotherapy drugs.  Every other indicator in Carmen's blood came back in the normal range, with the exception of her hemoglobin levels - which is still above concerning levels.

It is difficult to express the strength Carmen has.  I do my best to put myself in her shoes to imagine what it is like and I really do not know if I posses the same courage and determination she has.   She is truly the toughest little princess ever - which is why we are so convinced that Carmen is feeding off the power that you are all sending her.

This week Carmen and Mommy had to fly to Oahu on Wednesday night to prepare for their 9am Lumbar Puncture appointment at the hospital.   Her port was accessed for blood work, she was poked and prodded and then sedated for her lumbar puncture.  It is enough to put any of us down for days.  But not Carmen.  She takes all of this in stride with a smile on her face.   She did so well this week that Carmen and Mommy were able to head to the airport early.

Carmen has two weeks off and then starts the next phase of treatment is called "Interim Maintenance phase I" lasting for 56 days.  The chemotherapy drugs during this phase is a series of Vincristine, Methotrexate and Intrathecal Methotrexate.

Today is a beautiful day and we hope to get Carmen in the water again.  She wants to go for a Kayak, so we will see what happens.

Love to all,

Team White

Today...I received the Best Birthday Present Ever!!

Aloha to all,

Today.....is my 40th birthday and a birthday like no other.

Today....our beautiful daughter laughed out loud in pure joy. 

Today....she cried and she played in the sand with her little brother.  

Today....our princess swam in the ocean and gave me, "The Best Birthday Present Ever".

For those of you who are attending the "Big Summer Party in Ontario" at Julia and Scott's home, I wish, more than anything, that we were there to celebrate with you.  I realize that this party is being held in Carmen's honour to support her journey but I trust that you will take this opportunity to "laugh, love and live" together in celebration.

I want you all to know that our T.L.P., Carmen Leolani White, is fighting the fight of her life and winning!! 

Your love, support and devotion helps Carmen and our family everyday.

Our deepest appreciation and love to Grandma and Grandpa White, who dropped everything to be with us from May 28th to July 14th.   To care for our precious Trevor while we could focus on Carmen's wellness during those critical first days.  For being there for us when we needed you most.

Mahalo, Mahalo, Mahalo.
  

With warmest Aloha.

Team White

I would like to share a touching note that I received today from my brother-in-law, Darren Miller.  It is difficult to express how much his words and insight meant to me at this time.   It truly sums up the last 7 weeks and our family's current reality.

Happy birthday to you Chris!

It always makes me feel good knowing that my brother-in-law's birthday falls on the same day as my brother's birthday.

I know you and Heather have been going through such an unimaginable and challenging time.  You both have shown such strength in the course of what Carmen has been facing; strength that comes in tears as well as compassion and resolve.  Among the magical things that the TLP is, TOUGH is definitely at the forefront of her many abilities, and please remember that she gets a great deal of that strength from her two loving parents whose soul's she deeply adores.  Carmen is a tremendous healer on so many levels, as she continues to show us day in and day out; not just in what she is doing to heal her own self, but also in other ways, that might not always be as immediately noticeable, in how she is actually healing others through this process.

You and Heather are doing an incredible job through each and every challenging day, hour and minute -- and on your birthday (and for the purposes of this email I will go ahead and just proclaim this Heather's honorary birthday too, so you can embrace this together) you should BOTH know that and just take today to really breath that in.  You both deserve it and that is my wish for you on your day, and Heather too.

When the shock of a situation hits and reshapes reality like it did just weeks ago it makes each moment, day and second carry such different meaning.  Taking nothing away from the sheer gravity of the situation, please also remember that the ability for such a situation to instantly refocus you on the things that really matter and that bring true value in life is in itself its own miracle.  Amongst all of the unknowns, panic, upsets and tears I know there has also been many a miracle along the way in these recent weeks that both of you have also embraced. Whether small or big, these miracles are not the kind of gifts that can be bought and wrapped in paper with a bow on top, but rather the type that instead wrap around your heart and embrace your soul with the true meaning of life.

On your birthday (and honorary-birthday respectively) I am thankful for that and for the tremendous work you are doing with Carmen -- and that Trevor is doing too by the way (he is quite the spiritual-stud, as I am sure you might already know).   I am confident that everyone in the spectacular support system that has come together takes their hat off to you both, as well -- not just on your birthday but everyday.

I hope offering this up, unsolicited, is not taken in the wrong way or without enough context via email, but rather in the spirit of how I intend it; from the heart and with the hope that it might give an extra bit of brightness to an already special day that deserves acknowledgement in many many ways --

Aloha, Happy Birthday and Love,

-darren

Images of the Moment

 

Happy Birthday July 16th

Swimming Today!!!!!  July 16th.  First time since May 21st.  Best Birthday Present Ever!!

 Paddle Boarding with Trevor - July 16th.

Flying with Carmen - April 2011

 Grandpa and Grandma, Hanalei Sunset - April 2011

Rock Climbing - April 2011

Grandma and Trevor - April 2011 

Heart Breaker

Mommy and Carmen - April 2011

Grandpa and Carmen - April 2011

Consolidation lasts for 28 days

From the book Childhood Leukemia by Nancy Keen which is our daily go-to book...

Consolidation.  Even though more than 95 percent of children with ALL achieve remission during induction, without further therapy most of them would quickly relapse.  The goal of consolidation therapy is to continue killing the remaining leukemic cells and stop new diseased cells from forming.  This process is trickier than it sounds because cancer cells, which by definition are very unstable, tend to mutate frequently and can become resistant to the drugs that initially kill them.  As a result, consolidation therapy consists of new combinations of drugs designed to destroy the cancer cells that survived induction and to stop the development of new cancer cells.

Carmen and I flew to Oahu on Tuesday morning.  Getting her up at 4:30am was surprisingly easier than I thought it would be.  She was happy to have a "mommy-daughter" day with me as I have coined our trips for treatment off island.  The difficult part of the trip was not letting her eat anything until her sedation and lumbar puncture were over after noon!  When she can't eat or drink, neither do I.  So you get a really hungry mama and a suffering little girl.

Carmen is getting used to triage at the PAU clinic and got up on the scale, got her height measured and let nurse Sharon take her vitals with a smile.  She is beginning to feel more comfortable there and is enjoying being able to read books or watch a movie all the while having ALONE time with just the two of us.  The part she is not getting used to is having the port (surgically implanted in her chest last week) accessed by needle.  They do numb the site 1-2 hours prior to putting the needle in and taping it there for the visit.  I can't blame her.  I try not to let her see, but she is curious and wants to see what the heck they are attaching to her body.

She is also not very keen on going down to the "sedation room" which is quite sterile and getting all hooked up to everything then going to sleep.  I had her sitting facing me on my lap while a the sedation nurse and doctor were preparing her.  She was crying and I was telling her to try to picture her, Trevor, Neva, Raeva and her friend Javin running down the beach at Anini with Roxy running circles around them.  Trying to create an image of fun, happiness and peace while we were in this stark room.  While my body was trembling and her body was shaking with fear and I am crying but not letting her see, I just keep whispering in her ear.  I feel strong sometimes but not at all when my baby is going to be sedated and have needles in her body.  While I am whispering in her ear, I picture Chris holding me and whispering in my ear that everything is going to be all right and that we will see our baby girl grow to become an amazing woman and that we will watch our happy, lucky girl go to school, get married and have a family someday and that we will be around to see her when her hair turns gray. 

Carmen will be having these sedation and lumbar punctures for the next two trips to Oahu.  I hope they become easier.  I just don't know how parents do this!  I REALLY, REALLY commend all parents of children fighting cancer and all other types of diseases.  There are so many of us and it's not a group anyone ever wants to be a part of but now that we are we hope to become strong enough in the near future to help and support parents through these heartbreaking and difficult times.  It is getting easier though I know we have some more intense phases ahead of us.

On Carmen's Tuesday appointment we received her protocol treatment schedule for the next 7 months.  I am still reading over everything but there looks to be a part in about three months called "delayed intensification" which will last 56 days and be about as intense as her first month of induction therapy.  It looks like we will need to have some stays on Oahu then as there will be visits every few days to the PAU and maybe some in-patient visits.  Then after the 7 months are over, she will have a bit less than two years of maintenance therapy to undergo.  Then she should be pau!!

We are praying for strength to get Carmen and our family through these therapies and get her 100% well!

We are so overjoyed!  Carmen is really getting back to her old self!  She is happily playing with all of her new and wonderful toys and books sent by YOU!  She is constantly wearing this beautiful princess dress she received as a gift, and is really enjoying having her best friend and playmate in Trevor.  Her ANC has been a really good number so she has been able to have some visitors and play dates.  She is walking really well now and gaining strength in her legs and body.  As she gets back to her old self, she is forever a changed little girl.  Chris and I feel she has had to grow up so much in the past 6 weeks and that she is different and knowing.  She is very joyful and I think it because she is so happy to be out of the HOSPITAL and to have her body back!

Much love to you and your family and thank you so much for your support and for reading about Carmen.

Love,
Team White

A wonderful sign from Ceecee

May 14, Hanalei Bay

Taken May 14, 2011 as we watched an epic sunset at Hanalei Bay

Trevor's 3rd Birthday Celebration!!

YEAH!!  Everyone is smiling!!

M.R.D.

Yesterday was by far the happiest day of our life!!  I started to get nervous and anxeity filled Wednesday evening with the realization of what the M.R.D. result would possibly mean for our T.L.P.'s future and treatment.  I phoned the PAU unit at Kapiolani a few minutes after they opened to see if her results were in but was told the doctor would call me in about an hour.  I couldn't breath...

Dr. Des phoned me in just a few minutes and told me the MOST BEAUTIFUL words I had ever heard!  "Good news Heather, we found LESS THAN 0.01 percent of cancer in her bone marrow!"  We all cried tears of joy on our little Trevor's 3rd birthday and had such a wonderful day!  Happy Canada Day to all of our family and friends in Canada!

Complete remission - the absence of any signs of disease - is determined by analyzing bone marrow samples for Leukemia cells.  In the 1990's, technicians could only measure the number of leukemia cells to an accuracy of 1 cell in 100 cells, and at that time, complete remission was defined as less than 5 percent leukemia cells.  By 2009, tests at the molecular level for minimum residual disease (M.R.D.) could detect the number of leukemia cells to an accuracy of 1 cell in 10,000, or 0.01 percent.  Increasingly, researchers are incorporating the concept of MRD into their definition of remission for several types of leukemia.

Current treatment plans for ALL incorporate a "traditional" definition of remission of less than 5 percent leukemia cells and a definition of remission using MRD values.  Since 2009, the Children's Oncology Group (COG), the group that Carmen is a member of, defined MRD Remission as anything less than 1 percent and full remission as anything less than 0.01 percent.

The tests that Carmen received on Tuesday were gathering data to be measured for MRD.   We needed to wait until yesterday for the results and it was worth every second.

Not only that,  Carmen's doctor let us know that after 8 days of treatment, Carmen's leukemia cells we at 0.03 percent, meaning that her quick response to the chemotherapy treatment put her cancer in remission after only 8 days!!!!  Studies show that children who achieve remission in the first 7 to 14 days have an extremely good change of long-term survival.

Though this is amazing news that we took time to celebrate with a bottle of bubbly, we are staying vigilant for the next two to three years of treatment to KEEP her cancer free.

Carmen has now entered the Consolidation phase.  Without further therapy Carmen would quickly relapse.  The goal of the consolidation therapy is to continue killing the remaining leukemia cells and stop new disease cells from forming.  As long as her counts meet the protocol requirements, Carmen and mommy will be traveling to Oahu every week for the next three weeks for Carmen to receive LP's.  She will get intrathecal chemotherapy in her spinal fluid for her next three appointments which require her to be sedated.  By the way, Carmen's Oncologist never did find any cancer cells in her spinal fluid!!

This process is far trickier than it sounds because cancer cells, which by definition are very unstable, tend to mutate frequently and can become resistant to the drugs that initially kill them.  As a result, the consolidation phase consists of new combinations of drugs designed to destroy the cancer cells that survived the induction and stop the development of new cancer cells.

Putting all the scary medical "mumbo jumbo" aside for a minute we can all take this moment to celebrate this enormous achievement.   Our TLP is fighting hard everyday and she is hearing your prayers!!!

Today, Heather needed to take Carmen to Lihue for a blood test in preparation for her Chemotherapy therapy treatment on Tuesday.   Carmen's ANC and Hemoglobin came back terrific but her platelet counts were too low to receive the Chemotherapy Treatment.   Heather needed to change her flight to Honolulu to Wednesday and will need go for another blood test on Tuesday to ensure her counts are up.

I am happy to tell that you that our sweet little baby girl is starting to get back to her old self again.  The sound of her little voice and laughter is once again filling our home.  Gone are the cravings and returned is the appetite for fresh fruits and vegetables.  The juicer Heather introduced is a bit hit.  Carmen's mood is improving and her activity level and strength is slowing starting to return.

She is having a great time playing with Trevor and getting back into playing with her crafts and stickers.

Below are pictures from the last few days

Color Silly

Mmmmmm.......I am making juice!

Carmen's first Coconut in a month!

Tracing time!

Window Art

A little driving snack on the way to give blood this morning.

With Flying Colors

Once again our tough little princess went to battle yesterday and came out victorious.

Everything started on Monday night at 10:50pm when we had to start restricting Carmen's intake of food and beverage.  If you have been reading the last few blog posts you will know that our lives have been fairly focused on managing Carmen's ferocious appetite so you can imagine what sort of night it was.

We needed to be up early and to the hospital by 6:30am to get Carmen ready for her 8:30am procedure.

She was pretty scared with the pre-surgery commotion but was mainly pissed off that they only had blue socks to wear.  We seriously need to donate pink socks and gowns to this hospital.

While Carmen was sedated for her surgery the chief oncologist, Dr Kyono visited with Heather and I to explain the second phase of the procedure.  After the port-o-cath was in place, Dr. Kyono would be giving Carmen yet another spinal tap and take a bone marrow biopsy.  It is hard to believe that we are getting used to these phrases and treatments.

Dr. Kyono re-emphasized how important the first 29 days of treatment were for the successful cure of Leukemia.  If Carmen had experienced any complications during the induction or had to go back on antibiotics it could have disrupted the chemotherapy schedule creating unforeseen complications.  He told us that Carmen had come through the induction phase "With Flying Colors" and he expects nothing but positive results.

After surgery Carmen still had to spend time in the P.A.U. clinic to visit with the other oncology doctors and nurses.

Although Carmen's ANC level was a very positive 5,400, her Hemoglobin numbers were low prompting the need to give Carmen an unexpected blood transfusion.

In one day our baby received general anesthesia, surgery, port-a-cath insertion into her chest, a lumbar puncture, bone marrow biopsy, chemotherapy injection into her spinal fluid, a blood transfusion and her "piddycone" removed from her arm.  It is all too much to comprehend.

Jacquie was in the PAU while Carmen received her blood transfusion to do a wonderful healing and spend time with her buddy.  They have developed a very special relationship with each other, it is so wonderful to see.  Jacquie has three children of her own and has taken so much of her personal time as a busy mom to help Carmen.  We LOVE her!!

A day like yesterday is something that our family will need to get used to over the next 6 to 8 months.  The trips to the hospital will be unpredictable and stressful.    We started the day expecting an out-patient procedure taking 5 to 6 hours and ended the day after 12 to 13 hours forcing us to change our flights and not return home to Kauai until after Trevor was asleep.

Heather and I are ecstatic to finally stop giving Carmen her steroid and look forward to drug clearing her system.  Actually......we do not have to administer any drugs to Carmen until she receives her antibiotics on Friday.

Carmen's friend Neva came over for a play date today.   It was Carmen's first timing playing with her friend since all of this began.   Today was a good day.

Aloha

Team White

Images.

At least I have my pink hat

I love me some ice cream

Carmen's B.F.F. Neva

Rollin with my new Pink iPad.  Thank you Auntie Victoria. 

Always have time to shop for dolls

Blue Monster Tiger Face

Things have been "interesting" over the last few days adjusting to being back home.

Heather and I really see now that our time in Waikiki was completely focused on providing Carmen whatever she needed to heal.  It is also clear that we had created a bubble that was helping Heather and I heal too.   It was almost as if we were suspending reality and hoping to wake from a really bad dream.

Now that we are home getting things back to "normal"- going about daily life, running errands and returning to work the reality of Carmen's Leukemia has been brought to the forefront.  We are coming to terms with the fact that what we thought was once "normal" is now very different and changed forever.  I suppose, more than anything being back home makes it next to impossible to not think about things the way they were before May 26th.

Don't get me wrong.   We are extremely happy to be home.  Re-uniting Team White has been the boost that we all needed.  Trevor is the same, happy go lucky boy who fills the home with laughter.   We had a great weekend with Grandma and Grandpa White and got settled back into things. 

A few highlights over the last few days was seeing Carmen open all of the fun gifts and cards that so many of you sent to her, including arts & crafts, hello kitty clothes, stuffed animals, books and an amazing American Girl doll named Kanani.

Carmen helped her Mom make bread and fresh juice in our new bread maker and juicer.  Heather was already amazing at watching what our family eats, but now we have added a few more things to really help us ensure that our family is only eating the best for our bodies.

Carmen was excited to visit the Hanalei Farmers Market on Saturday where we stocked up on fresh fruit, vegetables and coconuts.  Unfortunately, the trip was probably a little too much too soon and proved that we have to continue to take things slow.  Then we came home and had a fun filled afternoon of face painting and setting up a tent in the back yard which provided tons of entertainment for Trevor.

Daddy and Trevor even camped outside on Saturday night and had a great time!

Heather and I are taking Carmen back to Honolulu tomorrow night for her 5:30am appointment on Tuesday.  This week is very important for Carmen's future.  Tuesday will mark the end of the induction phase.  She will be placed under general anesthesia to have a spinal tap, marrow biopsy and minor surgery to remove her Piddycone and insert a semi-permanent port-a-cath under her skin.  Unfortunately we need to wait until Friday for the results which will essentially dictate how the next 3 years of treatment will go for Carmen.

During the induction phase the doctors prescribe the same chemotherapy treatments for anyone who has ALL.  During this 29 days of induction the Doctors are gathering data, learning about Carmen's genetics and preparing for the final test results of induction.  Once all of this data is compiled, the Doctors will be able to ascertain which therapy protocol is right for Carmen.

It is amazing that they can fine tune Carmen's treatment to exactly what she needs.   On the other hand, it is upsetting to realize that this first phase of treatment may have been giving her levels of drugs that her little body did not need.  The bottom line is, the whole thing is amazing and terrifying all at the same time. 


It will be fantastic when her Piddycone is removed and she adjusts to the port-a-cath.  Even more, Heather and I can not wait until Wednesday when we can stop giving Carmen these Steroids that are reeking havoc on our sweet little baby - impacting her mood, activity level and appetite. 

We are staying positive and have every reason to be optimistic that Carmen's results will be stellar. 

When Carmen had her first spinal tap I asked you all to send positive thoughts towards Kapi'olani Hospital.  Please, where ever you are, send your prayers, love, light and positive energy towards Carmen on Tuesday at 7:30am Hawaii Time.

We love you,

Team White

A few images of the weekend.

Look at those eyes.

Fit for a Princess

Big Smiles

 Grandma "kitty" getting into the spirit

The Blue Monster Tiger Face

Monster Cave (tent)