Last Day in the Hospital

We started today optimistic that Carmen would be discharged from the hospital.  Everything was on track until the medical team started having a tough time drawing blood for their morning tests.  Unfortunately the steroid that Carmen is on can make the blood "sticky" causing small clots around the opening of her PICC line.  Once the blood was drawn, it was sent to the lab for analysis before the doctor would make the final decision to provide her with a blood infusion.  Although the Hemoglobin improved over yesterday's 7.3 to 7.6, the magic number the doctor is looking for is 8.0+.  The decision was made to provide Carmen with the blood prior to discharge.  All of these delay's have resulted in Carmen staying one more night. 

Another encouraging statistic was Carmen's ANC (absolute neutrophil count) level, which is an average calculating our bodies ability to fight off infection.  A normal ANC level is between 1500 and 8000.  When Carmen was admitted to the hospital, her ANC level was 0.  Today, her body has been able to restore her ANC level to 250.   The doctors are mainly concerned that the number is increasing but want the number to be 500.   This number will fluctuate over the next 30 days as Carmen's body is bombarded with the chemotherapy drugs and the reason why we have to be so careful with keeping her healthy.

Heather and I met with the lead oncologist today, Doctor Kyono to hear his analysis of Carmen's progression.   He expressed that he is encouraged by Carmen's strength and ability to fight through these treatments.   At this point Carmen has shown no serious side effects or reactions.  All we can hope is this positive trend continues.

Something specific that he mentioned was Carmen's ability to quickly void the "bad" cells on her own.  As the Chemotherapy drugs attack the Leukemia cells, it makes them literally explode releasing high levels of uric acid and potassium into the blood.  By themselves at low levels these are good things (around 0.5 to 5.0) for our body but the numbers in Leukemia patients can spike into the 1,000's.  Carmen has been able to keep her levels at 1.6 without intervention.

Jacquie visited Carmen this morning for another session of healing touch, which was once again an amazing experience.   Their session gave our little princess an emotional boost that lasted the whole day.  Jacquie was also able to articulate to us how Carmen is feeling emotionally, letting us know that she is starting to get sick of all these people poking and prodding her. 

Then we were so lucky to be visited by Auntie Teacher (Marau). the angel who runs Waikoko Kids (Carmen's pre school).  Marau brought lots of love, hugs and a banner signed by all of Carmen's class mates.  We all enjoyed the visit tremendously.  Marau has such a special way of bringing positive energy and joy to everyone.   Heather and I were also able to get some fresh air and pick up some supplies at the grocery store, including a huge baguette that Carmen promptly devoured as soon as we returned.

In anticipation of Carmen's discharge, our good friend Mary Hall, who was visiting from Kauai, brought our stroller and car seat.  This along with all of her luggage and three boys.  Thank you, Mary.

And of course...Carmen insisted once again to watch game two of the Stanley Cup final with her Daddy.  Go Canucks Go!!!!

It is simply amazing to me that Carmen is able to smile during all of this.   Her strength, determination and courage is inspirational.  It is almost as if she is telling her Mommy and Daddy that we do not have to worry because she is going kick this cancers butt!!!!!! 

Below are a few pictures of the day

 Waking up with Tucker....

....and a cookie.  

 Visiting with Jacquie

Day 10 in the hospital.  One day left

 Auntie Teacher

 The banner from Waikoko Kids

Time for a little top up

Ray of Sunshine

Piddycone

Sweet Dreams.....our Tough Little Princess

Balloons

Today Carmen received a new chemotherapy drug called Asparaginase, which has a host of side effects from mild to severe.  The drug is an enzyme that blocks protein production in cancer cells preventing them from reproducing. 

The Dexamethasone continued today which is a hormone to kill lymphocytes.

So far, Carmen has responded well to the Asparaginase,  other than being tired all day.   Unfortunately, too tired to take in Friday movie night at the hospital.

They are watching Carmen's red and white cell levels extremely closely.   If her red level dips much lower they may have to give her some blood.

Everything is a delicate balance.  The Chemotherapy drugs are intending to kill all of the Leukemia cells but they can not differentiate between sick and healthy cells.  Therefore, the drugs reduce her cell levels to almost 0 so that her body can start producing healthy cells.  However, dropping the cell level is also a dangerous tactic that can be harmful to Carmen.

One of our new best friends, Jacquie took time away from her family to visit with Carmen on Monday, Tuesday, Wednesday and Thursday to provide her with beautiful sessions of healing touch.  We are simply amazed at what this has done for Carmen.  As soon as Jacquie enters the room, Carmen lights up and welcomes her openly.  Jacquie and Carmen will play make believe and talk about things that happened during the day.  When Carmen is ready, she melts in Jacquie's arms to receive the healing energy putting her completely at peace.

We are getting Carmen out of her bed as often as her energy will allow.  Sometimes we will move to our "living room" and sit by the window on Carmen's day bed, complete with her Hawaiian sheets from home, pink pillow and snacks.  Other times we can ride around the corridors in a race car chair terrorizing the nursing students.  When Carmen was awake today we saw lots of smiles and heard her funny little noises...music to our ears!

The hospital let's all the children use DVD players and IPads chock full of tons of children's games and story books.  It is simply amazing how technology has not only kept Carmen entertained but also connected us to our ohana.

We are hoping for some great news tomorrow.  If Carmen continues to respond well to the Asparaginase and the cell counts rise, the doctors may discharge us.

Then we will move our little home away from home at the Royal Hawaiian Hotel in Waikiki.

Grandma, Grandpa and Trevor are planning on heading over to Oahu on Monday to visit with Carmen and reunite Team White for a brief time.

With warmest Aloha,

Team White

We are gathering all the balloons together and flying to the hotel tomorrow.

Tucker visits Carmen

The hospital has a resident dog on staff named Tucker.   Up until today Tucker was only a little stuffed animal that a volunteer staff brought Carmen.   But....today the famous Tucker visited Carmen and brought a huge smile to her face.  He hopped right up onto Carmen's bed and made himself at home.

Laughter is the best therapy there is.

 

 Hello Tucker

Making himself at home

Friends

Friends of Carmen White

Aloha to our Family and Friends,

All of your support, love, prayers and offers of help have been been extremely generous and overwhelming.  We are truly humbled by everyone's care and concern for our family.

As we learn more every day, it has become evident that Carmen's journey towards full recovery will span the next 3 years.  The induction phase remains at 30 to 40 days of intense chemotherapy treatments, followed by 5 months of weekly treatments in Oahu.  The next two and a half years will be less frequent depending on Carmen's response to treatment.   All of Carmen's treatment will take place at the Kapi'olani Hospital for Women and Children in Honolulu.   

Today we met with our Social Worker to discuss our situation and to receive recommendations to effectively manage what is going happen over the next three years.  He has recommended that we open a bank account in Carmen's name to help her on the journey to full recovery.  Learning all of this information has become a full time job.

Obviously, this was something that was tough to hear but I took the social workers advice and went to the bank this morning.

Upon sitting down with Heidi, I quickly realized that I was doing much more than opening a bank account.  Heidi told me that she understood what our family was going through and proceeded to tell me that she lost her 5 year old son to ALL in 1969 and her 11 year old grand daughter was in remission from ALL.   Heidi also put things into perspective, letting me know how lucky we are that we caught Carmen's Leukemia early.  I expressed to Heidi that I was hesitant to open this account and she quickly reminded me of how long Carmen's journey will be and the support that will be necessary.   When I was finalizing the paper work, I noticed that the balance was already $100.  I thought that this was a mistake or something the bank did in these circumstances.   When I looked up at Heidi, she just smiled and said;  "this is a gift from my family to yours.  God bless you."   After we both started crying and hugged I left the bank realizing that I just made a life long connection with a person who had been a stranger 20 minutes earlier.

Our health insurance is excellent and will provide Carmen with the best possible care but we are already seeing the numerous expenses adding up associated with the travel, co-pays, and other remote living expenses necessary to ensure Carmen continues to receive the best care possible. 

Another piece of advice we have received from the Lance Armstrong Foundation is; "We can not let the Cancer control us.  We need to Live Strong".   Carmen needs to beat this Leukemia and get back to living her normal life as soon as possible.   The sooner Carmen goes back to school, hits the beach and starts playing with her brother Trevor the better.

Any help you can provide to Team White during the journey towards full recovery will be so greatly appreciated and put to the best use, Carmen!

Much Love to Our Ohana,

Team White


Wire/Deposit Information
Bank: Bank of Hawaii - Waikiki Branch
2155 Kalakaua Ave, #104, Honolulu, HI 96815
Routing Number: 121301028
Swift Code: BOHIUS77
Account Number: 0008 108307
Beneficiary: Friends of Carmen White
Bank Contact: Heidi Emery 808.694.6926

This tax free account has been set up so that your receipt, check or deposit slip will be accepted as proof for a tax deduction under "Friends of Carmen White"

Day 2 of Chemotherapy

Today was all about relaxation and recovery.  The Doctor's wanted her to take things slow today.  Carmen only received one chemo drug today but she took it like a champ.  The dressing for the "piddycone" needed to be replaced today, which was a bit scary for Carmen but she got through it. 

Carmen received a nice care package today from her best friend Raeva, a new princess book from Andy, Colleen, Matty and Ryan and some new toys from her friends on Kauai.   She had fun eating her trader joe's blueberries and reading her new book.

Carmen insisted on watching game one of the Stanley Cup Hockey finals with her Daddy.  "Go Canucks Go"!!!!

 

 Carmen decorated her pink bag 

 

Carmen's first bowl of chocolate ice cream.  

Reading and Relaxing

 

Carmen's "Piddycone"

T.L.P.

TLP: Tough Little Princess

Carmen exceeded all expectations today!! 

Things got started bright and early with a trip to the sedation room for her first lumbar puncture (spinal tap) and her second bone marrow biopsy.

Carmen was sedated and does not remember anything from the procedure.   Mom and Dad wish they  were sedated because seeing your baby go limp when the drugs hit her system is something we will never forget.

She woke up from the sedation, groggy but already making up funny things.   As her eyes opened and I said hello, Carmen looked up at me and said; "Daddy, get me my glasses I have a lot of reading to do".

Once we returned to the room, Carmen cracked us up again saying that she had to get a lot of work done today.

Carmen also made up a name for her PICC line in her arm:  "Piddycone"

I have no idea where she comes up with this stuff but I love that she is making us laugh.  It is supposed to be the other way around.

After yet another trip to the playroom to make button rings, we returned to the room to receive her final injection of the day to finish off day one of chemotherapy.

Jackie is coming back again tonight to help Carmen with another session of healing touch.

We are being told that there will be "ups and downs", "good days and bad".

Today was a good day.

Thank you all for sending your prayers and positive energy to Carmen today.

It worked!!!  Keep it coming.

Love Team White