Our Sweet Angel

Our Sweet Angel

Friday, June 17, 2011

A Few of my Favorite Things....

Here are some things which have become favorites in our 3 plus weeks here on Oahu.

This little green-eyed kitty was lucky to come with us to Lihue the day I took Carmen in to see Dr. Ross for her fever.

Carmen received loads of beautiful balloons which made her hospital room much more fun, but this one (which is tied to the green-eyed kitty) has been the coveted!

This "button necklace" was made for mama the first day Carmen had Chemotherapy.  I proudly wear it everyday.

This was made by Carmen at the hospital for Trevor.  I love that she was thinking of him while she began dealing with all of this.

Loving the window art!

Art collage by Carmen!

Art Collage by Trevor!

T.L.P. having a super day today!

We want to thank EVERYONE again who has written to Carmen, emailed, messaged, sent gifts, sent prayers, donated, volunteered time, fund-raised, given support, lent us their car, loved us and just helped us overall.

Thank you, thank you to the awesome peeps at St. Mary's High School in Kitchener, Ontario  

            We can do no great things, only small things with great love.  ~Mother Teresa

Thursday, June 16, 2011

Window Art

Yesterday completed Carmen's third week of Chemotherapy.  As we have mentioned previously, Carmen will be having her out-patient chemotherapy treatments every Tuesday at Kapi'olani Hospital indefinitely.   As we approach 18 to 24 months, Carmen's weekly visits may become bi-weekly or once a month.   All of this is based on her progress.

The appointment yesterday was difficult for Carmen.  Though the nurses and doctors are amazing to Carmen and do their best to provide a soothing environment - she wanted no part of it.  Understandably, she has a lot of anxiety and fear of the hospital and anyone who even looks like they may want to stick a needle in her.   Fortunately or unfortunately...Carmen will get used to these visits.

She got weighed, got her piddycone dressing changed, had a blood draw, got her IV chemo med, and had her piddycone line flushed out with saline which she freaks out about because she can taste the salt.

Her CBC (complete blood count) results were;

                                                     "normal range"
WBC (white blood count)   1.2       (6.0-16.0)
RBC  (red blood count)       3.32     (3.5-5.5)
Hemoglobin                         9.7   (they transfuse at 8.0)
Hematocrit                          28.4     (33.0-39.0)

All pretty low.   This is part of the delicate balance that I have mentioned in earlier posts.  The chemotherapy drugs are killing Carmen's cancer cells and healthy cells.  As the cells die, her blood counts decrease.  The new, healthy cells multiply quickly to replace the dead cells. 

Her Platelatet are normal!!  219

Her ANC is 692 - these are the WBC's which are able to fight off infection.  Normal is 1500 to 8000.  Carmen is in the 500 to 1,500 range, which is considered the safe zone - with risk.  Basically, a place that we need to be ultra careful.   As a reminder, her ANC was 0 on May 25th so they are slowing climbing.  They were 639 last week.

Today was a fun day for Carmen.  After her pre-breakfast, breakfast and post-breakfast meal, she wanted to go back to the zoo.  Of course, not before her mid morning meal at Jamba Juice.  Mommy is happy to parade Carmen all over Waikiki, just so happy that she has the energy.  Carmen's need for naps are become less frequent and she is able to make it most of the day.

After several lunches and a mid afternoon snack, Carmen had a terrific visited from Jacquie.   It was time to break out the super cool - Window Crayons!!!  Who knew?   These crayons write on glass and wash off.  At least...we hope they wash off!

Below are a few images of the day.

Sunday, June 12, 2011

Bacon Fairy

We had a wonderful invitation to visit some dear friends Scott and Laura Phillipson for dinner at the home in Lanikai tonight.  We played it by ear and Carmen seemed happy to go on a car ride.  We made sure to have a wide variety of Carmen's favorite foods with us.  We do this now everywhere we go!  The evening went great and Carmen ate Annies Pasta with crumbled bacon! (the food of the day) Carmen's appetite has officially kicked in.   The appetite and cravings are due to her medication but it is so nice to see her gaining her strength back.  Scott and Laura treated us to our first homemade meal since late May...Thank you guys!

Carmen has become very decisive in what she wants from moment to moment the past few days.  I am pretty happy to be here in Waikiki as there is any type of food she could possible want within a few blocks.  Carmen's ferocious appetite wakes her in the middle of the night anywhere between 2-4 where she will ask in a sweet, clear, happy voice, "Mommy, wake up!  I want some rice please!"  Or whatever the craving is at the moment.  Then she will eat for 45 minutes to an hour and say she is tired and is ready to go back to bed.  I am sleeping with her and put my headlamp on while she eats and shoot the light at the ceiling to give her some light and try not to wake daddy who is back working now in an office here in Waikiki.  Then around 6am, again clear as a bell Carmen will say, "Mommy!  Time to get up!  Lets go to breakfast!!!"  So I usually shoot our of bed, put on my hat and my trusty 7 pocket mommy pants and off we go!  This has been the pattern the past week or so. 

So usually before noon, we have gone to breakfast, then walked to the end of Kapiolani Park and back, gone to Jamba Juice, back to the room, out again to find bagel #2 of the day, back to the room, then off to find edamame and sushi rice with seaweed.  Good think that is easy to find in Waikiki!

Carmen is not really napping as much as she is resting very frequently during the day in bed.  We will lay down for a rest, read a few books, then she will say, "Mommy, lets go for a walk!"

Along with the food cravings and increased appetite there are mood swings associated with the chemotherapy drugs she takes every day.  So one minute she will be laughing and the next screaming at the littlest thing, which of course when you're 4 and have Leukemia, nothing that goes wrong is little....EVERYTHING is a big deal.  Totally understandable.  My patients has instantly become that of a tolerant grandparent who only cares for their grandchild occasionally.  The half a dozen times a day I go looking for the right kind of food she wants, the times I get exactly what she wants and she screams, NOOOOO!  That's WRONG mommy!  Nothing is upsetting to me because I am so grateful my daughter is here to scream at me!  I know this time shall to pass, and I will get my little girl back again  My sweet, happy little girl back with her whole body mended and feeling good again...someday.

After our breakfast with daddy at the crack of dawn this morning we headed down for our walk to Kapiolani Park and decided to try to take Carmen to the Zoo!  These things all depend on crowds, heat, and other kids.  Carmen still has very low white blood cell counts, especially the ones which fight off bacteria and virus'.  We have to be extremely careful when taking Carmen out especially where there may be sick kiddos or kids with undiagnosed chicken pox.  Chickenpox or pneumonia could be life threatening to Carmen for the next few years while she undergoes Chemotherapy treatments.  The Zoo was pretty empty and open air and we had a great time for about 45 minutes.  Then Carmen said, "Mommy, I want more bacon!"  "Let's go back to the hotel to get more bacon!"  At the same time Jacquie called looking for Carmen to do a healing touch session.  I told Jacquie we were at the zoo, but maybe coming back to the hotel to get more bacon and Jacquie excitedly said, "I have bacon!"  Long story short she met us at the zoo entrance and presented Carmen with several lovely pieces of bacon and some pixie dust!  So we decided to name Jacquie our "Bacon Fairy."

There was a parade today in Waikiki to celebrate King Kamehameha Day.  We found a not so crowded spot and were able to stop for a few minutes so Carmen could see her first parade!

Last night a wonderful friend, Victoria Paige watched Carmen while she napped so Chris and I could go downstairs and have a glass of wine and laugh and cry together for a short time.  Having moments like this with him reminds me why I married this stand-up, sweet and strong man.  This is the "sickness" part of our wedding vows which we never dreamed would refer to our sweet children.  We have been told we are the right people for this work ahead of us and I know I could not do this without him.  We have never been a more united front and our love is stronger than ever.  This illness has brought our family closer than we could have ever imagined....for the better.

We will kick this Leukemia's ASS!!

Much Love to you and your families,