The numbers were not nearly so good this morning, but as Kinsey said, "Hey, it could have been a lot worse." Her neutrophils were actually up slightly from yesterday, at least percentage wise, according to the computer count: 2.1%. The monocytes were down drastically from 4.3 to 0.7, a not so good sign. The manual count showed the lymphocytes to be back up to 97%, while the computer count showed them at an all-time low: 88% (because of another type of white cell: basophils which showed up for the first time with some "significant" numbers). The doctor says at this point any white cell other than a lymphocyte is a good sign. But he also says the manual count is more accurate.
So we will wait and watch for tomorrow. Her CT this morning showed no improvement and a slightly worse picture. No new nodes, but some were a little larger, about what he expected or actually he said, "about as good as we could hope for." The bottom line is that against some serious opposition, he wants to continue to wait and watch unless she starts to decline again. He said, "If she looks on Monday the way she looks today, we will continue to wait." He talked with Dr. Young of NIH this morning who said, "You can't go longer than 3 months after beginning treatment with AA and no neutrophils to speak of." Kinsey is 7 weeks and 3 days post beginning of treatment. So the possibility exists if she gets no worse we could wait and watch for another 4+ weeks. However, Dr. Margolis says we will burn no bridges and continue to schedule radiation and reassess frequently knowing the plan may change quickly if her condition does. He reiterated, though, that what he is seeing that the "peanut gallery" (those who insist she be transplanted right away) is not seeing, is Kinsey herself. Kinsey "looks good."
For those of you who know her, you would probably not agree. Her eyes have dark rings around them. Her right eye is almost totally "bloody" from the hemorrhage (caused by the combination of low platelets and hard vomiting). Her little back is very hairy (from the steroids) and she still has lots of little red spots under the skin. She has several bandages on her back, side, and chest from the procedures and biopsies. Her once beautiful olive skin is somewhat pale and unhealthy looking. But, I have to agree with Dr. Margolis, she looks good. She is my beautiful little girl and her smile (which we still get to see occasionally) lights up a room. Her dimples are incredible and her soulful eyes—despite their current troubles—still make you question if she could possibly be only five. Right now, as I type, she is watching Free Willy 3 and giggling periodically—the greatest sound!
We went out on a pass today again (without Jillian, who has a fever and some cold type symptoms suddenly, and without Aunt Ann, who graciously stayed with Jillian). Thank God for Aunt Ann! And thank God for Aunt Dee Dee (my sister) who is coming for a week or two to provide some additional support and relief.
We are still in search of a good Mexican restaurant and in the meantime mentioned, in a long list of possibilities, to Kinsey, Cracker Barrel. She perked up; it's the Kentucky blood. We actually found one in the next county, just a 20 minute drive up the highway. She ate a bit and then we tried to make it to the movies but were a few minutes late. She elected to shop instead of going in during previews. Bad news for us financially. She wanted to go to the book store and video store. Two new Scooby Doo videos, several mystery books, and some gummy bears later, our purses were lighter and she was a happy camper. She kept wanting to delay the return but finally relented when we reminded her that here we could watch the new videos and read the new books.
Her
cousin James arrived from Kentucky tonight and brought another car load
of gifts: books, art supplies, stuffed animals, house shoes, and more.
She loved all the packages and bags and will enjoy re-looking at each
thing individually as if it is new when she's ready. That's what she's
done with all the gifts my sister Diane brought last weekend. She said
earlier today, "Mommy, could I see the Harry Potter box now."
I didn't remember what she was talking about, but she pointed to a stationery
set that had been on a shelf since last weekend. She went through it and
played with the various pieces for an hour. Those of you into Harry Potter
will appreciate the Quidditch ball (snitch?) hanging from her IV pole.
It doubles as a pencil sharpener. Yesterday, it was the gel art set from
my sister Teresa she spent an hour investigating and creating with. Some
of the other gifts like the CD player she uses on a daily basis with frightening
imitations of a teenager, rocking back and forth ignoring the world around
her with her headphones on. She even took it out on pass yesterday. She
still plays with her computer daily, and thanks to my wonderful friend
Ami, we now have a second laptop so the competition is less fierce. Thank
you, Ami!!!
Her
room is starting to look more like a child's room, were it not for the
double-wide IV pole beside the bed and urine containers in the bathroom.
There is the blood pressure and thermometer stand and the needle sharpie
box on the wall. Oh yeah and the oxygen, scopes and other devices at the
head of her bed. But other than that, there's Minnie Mouse, several other
stuffed animals, her faithful Cecil B. Cozy, cards on the bathroom door,
lots of photos, games, puzzles, videos, art supplies, books, Kinsey art
work (although most of it has gone to doctors and nurses lately, we are
happy to say). There's a moon and star mobile that a very tall inventory
clerk helped me to hang the other night, after our outing to IMAX and
the museum gift shop. And then Kinsey and I decorated a posterboard full
of stars with another moon. Both glow in the dark! Her sister's Happy
Birthday balloons are still here too. And all in all, it's a pretty cheerful
room. The view of the helicopter out the window is kind of fun also. With
the sound proofing, we rarely hear it and only get to see it when we happen
to notice. Our room in Albuquerque vibrated regularly with the deafening
sound of take off and landing. Despite
how nice the room and hospital are, the daily outings have been wonderful,
for her and us. I told a social worker today that there are brief moments
when I forget we are not just another family going out to a movie or to
eat or to the zoo. But there are those moments, too, when I look around
me and think, "I used to be a mom pushing a stroller, too. Now I'm
a mom pushing a wheelchair." The looks Kinsey gets from other kids
are curious, especially when she's wearing the mask or now that her eye
looks so bad. The looks from parents, though, are worse: either avoidance,
as if she must have some awful thing their precious healthy children could
catch or just discomfort. They, I think, don't want to think about where
a walk in our shoes would go. I understand that. I remember giving Kinsey
options of what children to donate books to, books she requested for her
birthday in lieu of gifts last September. The Red Cross, who could give
them to kids who lost their homes, a shelter for kids who have been abused
or neglected, a hospital where sick kids are. She picked the shelter,
and I remember being glad it wasn't the hospital. I told Audrey, "She's
a little young to expose to something that depressing, really sick children."
I know I didn't want to be exposed. If I had one personal wish, it would
be that Kinsey get well and live a full, happy, healthy life, along with
her sister Jillian. If I had one big wish, a global one, it would
be that there would be no sick children in the world, that anyone under
the age of 20 would not be able to get anything worse than a bad cold.
World peace, an end to hunger, would be down the list below that one.
I
saw a baby here the other day learning to walk. I passed a room with a
baby crawling across the floor, screaming, and dragging his IV pole behind
him, his central line strained to the point I nearly rushed in to yank
the pole to his side. I tried to calm him briefly before searching for
his mother since I didn't know what level of isolation he was in. I found
her coming calmly around the corner. She waved her hand at me, saying,
"Oh he's fine." Fine. I remember Dr. Margolis telling us all
the facts about Kinsey's probable emergent need for a transplant and the
low odds of her survival regardless of what they did. Toward the very
end of that BMT 101 lesson, the phone rang in the meeting room. He answered,
nodding. It was the lung surgeon calling him about Kinsey. He turned to
us and said, "She's fine. She's just fine." She had come through
the biopsy without bleeding or complications. After he left the room I
asked Audrey who was crying with me, "Doesn't it seem odd to tell
us she's most likely going to die and then assure us she's fine in the
next breath." But such is life here. Today, she is fine. Today she
is alive. Today, she laughed. She played. She talked. She cried and got
scared about medicines and new nurses. She didn't want Audrey to leave
tonight. But at the moment, she's fine. No fever at the moment. A few
neutrophils at the moment. Plenty of spunk and fight in her today. My
nephew Sean put an article about Kinsey in a Marine newsletter and wow!
The response has been incredible (check out the messages on her website).
She's also gotten several directly to this email address. Her new nickname
is "Devil Pup" (as she is too small for the Marine name "Devil
Dog"). What a wonderful group of people pulling for her, praying
for her, cheering her up. If only this disease were something that could
be beaten through combat, these men and women would kick its ass! Sean,
my niece Jacki, and their girls Kayla and Miranda are coming to visit
tomorrow. Kinsey is looking forward to seeing the cousins she played with
at the beach last summer. She wants to go on a pass with them to see the
new Disney movie or to the zoo again or... And we will go, because today
she is fine.
Top
Previous
Next