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,