Our Sweet Angel

Our Sweet Angel

Friday, June 10, 2011

Photographs of the past few days...

Trevor hanging in Waikiki
 Carmen at dinner at the hotel
Trevor learning how to drive...
Carmen and Raeva "holding hands"

 Getting some fresh air

Right before Trevor went back to Kauai with Grandma and Grandpa

 Edible Creations, YUM!

Beautiful Jacquie




Healing touch energy work

T.C. loves the pretty ladies!

 Tiny dancer



Thursday, June 9, 2011

Mahalo

All of the support, well wishes and prayers for Carmen has simply been overwhelming to our family.   I can assure all of you that Carmen is hearing and feeling all of the positive energy you are sending her way. 

Heather, Trevor and myself are taking our energy from Carmen's courage and Team White is standing strong. 

Carmen continues to have good days and so far the side effects to the chemotherapy have been kept to a minimum with the exception of being tired way too often for a little 4 year old and a ravenous appetite at 3:00am for rice crackers and rosemary artesian bread. 

Although these are good days, there are many warnings from the Oncology Doctors that we need to prepare ourselves for the not so good days.   We are living by a "one day at a time" philosophy right now and will deal with any type of day that is thrown our way.

There is so much Heather and I need to say to everyone.  Words simply can not accomplish what we need to say to thank all of you.  Please know that we appreciate everything you have done and will do for our family from the bottom of our hearts.  We are on a journey that will be so much easier to take knowing we have you behind us.

Mahalo

Team White 

Below is a race badge worn by Carrie Lee, friend of Carmen's 
 Aunt Carri McClure, during the San Diego Rock n Roll half marathon.   
Thank you Carrie Lee.








Tuesday, June 7, 2011

Rhinoceros Horns

Carmen had such a huge surprise today when she returned from the hospital.  The magic pink hotel fairies decorated Carmen's bed with beautiful princess things bringing a huge smile to her face.  There was a crown, pink boa, wands, princess checkers, paper, wings, tutu, fluffy pens and special pink ballet shoes.  Thank you hotel fairies.

Carmen slipped the shoes immediately and wanted to show her Grandma and Mom a "few steps".

Jacquie visited Carmen again today for healing touch.  Along with her healing touch, Jacquie and Carmen have developed a terrific bond, playing and having fun during their visits.

Our friend Laura Phillipson came by the hotel today and joined us while we he had dinner.   Trevor put on another show and had the whole restaurant following his every move.

Something else that I have been remiss in mentioning is another funny thing that Carmen has been saying.   One of the medicines that we have to give Carmen does not taste very good.   We try to wash it down with water but it still tastes bad.   When we asked Carmen what it tastes like, she looked her Mommy right in the eye and screamed, "It tastes like Rhinoceros Horns".  Now that medicine is affectionately referred to the Rhinoceros Horn medicine.

Princess Bed


Huge smile

PAU (Pediatric Ambulatory Unit)

Yesterday was the first day we have missed a blog post since all of this began.  It was an exciting day adjusting to living in the hotel and welcoming Grandma, Grandpa and Trevor.

It was so great for everyone to get Team White back together but especially for Carmen and Trevor.  It was so sweet to see them both  light up when they saw each other.

Grandma and Grandpa White have had their work cut out for them keeping up with Trevor over the past week.  We are all together until Thursday when Trevor returns

Today marked Carmen's first out patient visit to the Pediatric Ambulatory Unit (PAU) to receive her chemotherapy treatments, which included another lumbar puncture, blood work, a series of other drugs and the changing of her Piddycone dressing.

I am typing this post in the waiting room as the nurses monitor Carmen's response to the treatment.  Carmen's blood work just came back and I am happy to report that her ANC levels are now 639, up from 512 on Sunday.  Her hemoglobin levels are now 12.6 up from 10.6 on Sunday. 

These are all positive numbers, meaning that the chemotherapy is working and her body is responding well to everything.  The Doctors are extremely encouraged with all the lab results.

So far, she continues to handle the treatments like the Warrior Princess that she is.


A few pictures of the day.

Grandpa and Grandma


Trevor Putting on a Show

Monday, June 6, 2011

A HUI HO (until we meet again)

Carmen was discharged from the hospital today at 11:00am. 

It is amazing what one day can do.   Yesterday I mentioned Carmen's Hemoglobin was at 7.6 but needed to be over 8.0 and her ANC (absolute neutrophil count) was at 251 but needed to be over 500.

This morning Carmen's blood test came back with a whopping 10.6 Hemoglobin and 512 ANC!!!!!!

The Hemoglobin increasing was primarily due to the blood transfusion but the ANC increase was all Carmen and her body's will to fight.  All great news and provided us with the confidence we needed to leave the confines of the hospital.

As much as we wanted to leave the hospital it was also terrifying to depart our safety net of the amazing medical team at Kapi'olani.   Everyone we came in contact with at the hospital was incredible treating Carmen with care and love the entire time. 

Before we left Carmen was visited by a real Princess....a.k.a.....Miss East Oahu, with a crown and beautiful leis.  It was yet another great thing that the Kapi'olani Hospital arranges to lift the spirits of the children.

During the ten days in the hospital, Heather did a great job making the room feel as much like home as possible.  Today....we had to relocate our little home away from home to the hotel - along - with Carmen's 15 balloons.  We were quite the spectacle, rolling into the Royal Hawaiian Hotel with balloon, bags and a look that can only be achieved from living in a hospital for 10 days.  I am not sure the guys at the door knew quite what to make of the whole situation but they jumped to attention and made Carmen feel right at home.

For those of you who do not know, The Royal Hawaiian Hotel is painted pink and known as "the pink palace of the Pacific".  Mom and Dad told a little white lie today and let Carmen know that the hotel was her castle and it was painted pink just for her arrival.  She loved that. 

As soon as we got to our room, Carmen wanted to go for a walk.  It was so nice to see her outside and unplugged from all of the wires.  We walked up and down Waikiki and bought her a brand new pair of pink crocs, since Mommy only had time to pack her play shoes when she left for the clinic in Kauai last Wednesday to check on Carmen's fever.

Carmen is feeling great, her appetite is increasing and she seems like she will be ready to run around soon.  The medication we have to administer twice a day is still going to make her tired.  We need to keep a close eye on Carmen over the next few days to make sure the infection does not return.  Carmen's next visit to the hospital is Tuesday for another round of Chemotherapy and spinal tap.

Grandma, Grandpa and Trevor arrive tomorrow at 1:30pm.  We have been keeping in tough with Trevor via Skype but it is going to be so terrific to see little T tomorrow and reunite Team White.

Below are a few shots of the day.


Unplugged
(The Piddycone stays in for the next 30 days)


 Princess


We are out of here


Have balloons, will travel