This Star Won't Go Out

We are now well into 2009 and are grateful for every moment with our Star (Dad’s nickname for Esther). Sadly, because of the chemo, she’s been slowly losing her recently brightly colored, pumpkin-orange hair. Her eyelashes, eyebrows and skin have been affected, too. She’s brave and shrugs it off but we know it can’t be easy to go through this. On a very positive note, Esther did pass 90 pounds this week!! She was 20 pounds less not too long ago so this is fantastic news. In fact, 100 pounds for her size and body type is the ceiling for her. This weight gain is a strategic part of her battle and we’re glad to report she’s winning there. Also, her numbers (I am lumping in a bunch of info here) have been quite good and we were told this week that there is a chance that she may respond to additional, related medical therapies once the present plan runs its course. Good news, indeed!


Her weekly routine includes visits to the cancer clinic in Boston (though we were there twice for her this past week and nearby for a third appointment for Graham). If we let her she would easily sleep 16 hours a day but we try and keep it to 12. We are still struggling to contort her sleep/wake patterns into our daily schedule. She’s never happy being awakened for medicine or whatever. She sleeps with a mask on as her small Bi-pap machine forces air and oxygen into her lungs which works to ease her part in breathing with less discomfort. During the day she breathes via a nasal tube attached to either a portable canister (for going downstairs or out of the house) or to the oxygen machine itself, a permanent fixture in her bedroom.


She loves to eat a spicy Chinese vegetable food dish from a nearby restaurant and asks for it at least twice a week. She likes the chocolate cake from Olive Garden, too, which we sometimes pick up after a trip to the hospital. She enjoys painting her nails strange colors and her little brother Abe likes to have her paint his nails regularly as well (he also demands that she routinely paint his face as some superhero, though not with nail polish! Her artwork on skin or canvas, is always amazing). She adores her cats and would like to have a third or fourth cat running around (ain’t gonna happen: Dad). Her cats sleep on her bed, taking turns sleeping on her tummy! She said she’d love to live somewhere where she could have animals of all types running around to enjoy (for now, she prefers that idea over hanging around people). She is reading bits and pieces in several subject areas, but mostly lives on her computer, writes, paints or watches TV leaving her room every day or two to play board games and visit with us downstairs. She is still the positive, cheerful girl we have always delighted in! In spite of this awful cancer and its cruel side effects, at 14 1/2, and a few months away from beginning high school, there is no stopping Esther from turning into the young, beautiful woman we always dreamed she would become.





Saturday, February 7, 2009 6:51 AM, EST


This week has been a bit tough, with a new type of headache that has kept Esther from sleeping and kept her in quite a bit of pain. The result now is that her schedule is completely upside down—awake through the night, and finally able to sleep through part of the day.


Her doctors are working on medications, and have taken her off her chemo for a few days to see if it is because of the larger dose she’s been taking for the past week or two. So right now we’re living on pain meds . . . trying to keep them in her system constantly so she gets some relief.


Other than that, her numbers are still good. Hopefully just a small thing to get through.


Grandma sent her some toys for her kitties—we’ve laughed and laughed at the “feathers on a fishing pole.” When they manage to catch the pile of feathers, they try to sneak off with their “bird” but of course get pulled up hard when they get to the end of the string we’re holding! Hilarious, as they will do it over and over. Esther also got a package this week with a colorful lap quilt from some friends. She and I have been enjoying the antics on American Idol; Esther has been painting, reading (when her headache is down), and of course “computering”!





Tuesday, February 10, 2009 5:38 PM, CST


The good: Thankfully, we just found out that Esther’s CT and MRI scans from yesterday are normal! Everyone was worried about about the cancer having spread to the brain, etc which would have caused these recent symptoms.


The bad: Though her parents and medical team are overjoyed, she still has the intense headaches. We hope to get a different pain medicine approved and that should help (though so far the insurance co has denied it). She’s miserable and just wants to sleep. Waking up over the last several days hasn’t been any fun as it involves vomiting, nausea and migraines.


Keep praying and hoping!





5am February 1/2, 2009