Kinsey
announced last week that she thought the dragon was losing. We call the
Aplastic Anemia a dragon, and she said she thought we had tricked him,
that there were so many dogs and pups fighting him that he didn't have
much of a chance even though he had thought he could kill her. We told
her it looked like he was definitely losing some steam but still had a
lot of fight in him and so we still had a lot of fighting back to do.
That night she needed to take the dreaded cyclosporine, have her mouth
swabbed, take a shower, and get her bandage changed. All of these things
are daily except the bandage change which is every other day, so you would
think she would be used to them, but it hit her somehow anew and she was
overwhelmed. She started melting down and crying, "I'll never get
better." We both got upset with her for fighting us and screaming,
etc. But when the cyclosporine and the mouth rinse were done, she made
this announcement about the dragon.
In the shower she said, and I quote, "Mommy, I just want to thank
you for saving my life." "What do you mean?" I asked her.
"Well, she said, for all you're doing and for staying up all night
just to make me better."
I told her I'd gladly never sleep again to make her better and that it
REALLY was not that hard, that I loved being able to take care of her
and that her Mama and I would do ANYTHING to make her better. She said,
"I know you would." I told her that I would even give my own
life to save hers and she said, "But that would be really hard on
us Mommy." "I know," I told her, "but still I would
do it."
We went on to talk about how she continued to get better and how much
we needed those neutrophils.
Yesterday, my sister Diane and her family came up to help Kinsey with
the official "Lordy, Lordy Mommy's 40" birthday party. After
the great news on Wed. of 357 neutrophils, the numbers had dropped to
255 and then 295, so getting 500 for yesterday looked unlikely. We even
discussed using another lab number to allow Kinsey the same thrill of
tricking me and surprising me with the real one. I told Audrey, "If
her albumin is up past 3 use that (it is a key number that will allow
her to stay off the IV nutrition, an experiment the doctor is willing
to try for now). Pretend to surprise me about that. Or if her APC (total
"good" white cells) is higher than 500, use that. Well, as it
turns out-we didn't need to create good news. Kinsey called me to say
her neutrophils were 300. The even number tipped me off. Audrey said,
"Tell her that your segs were 21 and your bands were 12 and your
white count was 2.0." That told me I could do the math on my own
without Kinsey knowing I was calculating the true number: 21+12=33x20=660.
660!!!!! She had done it again! So I pretended to be happy enough about
300 and told her maybe we'd hit 500 by the next weekend, not to worry.
She smiled. Then we all headed for the lake after stopping to get chicken.
We ate, listened to music, watched the girls play together, took pictures,
opened gag gifts. The cake had a cemetery theme going. My first present,
though, was Kinsey jumping out from behind a tree with a bow on her. She
let me open my eyes and announced, "660 neutrophils Mommy!"
I screamed, grabbed her, twirled her around and fell into the grass tickling
her saying, "No way!" We rode surry bikes (I pedaled all four
kids around with some help from my 11 year old niece; I think I must be
too old to be doing that in heat and humidity because the rest of the
day everyone kept asking me if I was all right; my face had turned "as
red as my shirt"). The girls, Aunt Dee Dee, Aunt Ann, Jennifer, and
even Audrey danced a bit-the hokey pokey and others. It was a GREAT day
and the best birthday party I've ever had. The numbers today overall were
a little better with the neutrophils at 640, a tiny drop.
The biggest negative the last several days has been that Jillian has been
sick. Her mystery fever (a recurrent fever without other symptoms which
has been going on for about 17 months every 4-8 weeks) appeared again,
only 3 weeks after the last episode. Not knowing what it was and being
afraid to have the girls together, I tried to get her in to see a doctor
on Friday but was referred to the ER- where she spent the better part
of the day. Blood and urine tests showed nothing (as usual) but her fever
kept creeping back up to 104+ every few hours. Aunt Ann, who had been
planning on going home Friday, stayed and kept Jillian with her and away
from Kinsey initially until we were sure no other symptoms would appear.
There was one point in the ER that was surreal. Ann and I had taken Jillian
there. Audrey and Kinsey were in the clinic on the 8th floor. When they
finished, they walked down to see us. So here's one kid with a mask on
and a backpack connecting her to tubes and a pump. She's NOT the one being
seen. However, within minutes of being there, she gagged and Audrey who,
was in an exam room raced to the registration window through which she
tossed a trash can to me and I got it in position just in time. We have
experience with this. I left with Kins after that.
Jillian seems to be better today but is going to the doctor tomorrow anyway
because I want to ask about additional tests they wanted to avoid a year
ago in an effort to get to the bottom of this thing they thought in Albuquerque
she'd just grow out of. I simply cannot deal with more than one sick child
at a time and Audrey was pretty stressed as well. Not to mention Aunt
Ann.
This should be another eventful week coming up. In addition to the Jillian
drama and follow up, we have a meeting with Kinsey's doctor on Tuesday
to discuss progress and next steps. We are hopeful that she will be able
to go to the clinic 3 or 4 days a week instead of 7 or that we will be
able to administer weekend meds out-patient. We are hopeful he will tell
us how thrilled he is with her progress and how optimistic he is and how
she may be able to go to school and we could actually get to go home by
the end of the summer. We are hopeful he will say we can take a short
weekend trip or two to see friends and relatives this summer while we
are here. We are hopeful he will say he cannot believe a few weeks ago
he was encouraging us to talk to Hospice. But we don't know for sure what
he will say. And we do know that no matter how exciting the current trend
feels, this is a "humbling disease" with many mysteries and
unexpected setbacks.
The other 5 year old girl here from Albuquerque, Kailee, came here with
more than 1000 neutrophils. She has bounced from 500 to 1800 since then
and back again. They recently dropped to 400 then 200. She had gone off
the G medicine to give her own body a chance to produce the cells. It
didn't appear to be working. She took one dose and the counts went back
up right away. Then back down again. They were 300 today after having
gone to 1400 a few days ago. They had a trip planned for the weekend,
were packed and ready to go on Friday. Her labs came back and the trip
was off. While Kailee is still, overall, doing well, it just shows the
unpredictable and volatile nature of this disease. Kailee's mom gave me
a copy of a recent study done by Neil Young, the guru of Aplastic Anemia.
The 1/3rd I understood was 1 part comforting and 9 parts totally scary.
It is one of the things we will discuss on Tuesday.
Another reason this is a big week is that tomorrow my little sister, Teresa,
will go through an embryo transfer in an attempt to get pregnant with
my embryos. Some of you are aware that we are doing this; to others this
will be new news. When I got pregnant with Jillian through a G.I.F.T.
procedure (gammete intrafallopian transfer) a wonderful man named Dr.
James Lohman harvested 24 eggs and selected 4 to put back into one of
my tubes. Donor sperm was also put into the tube with the hope that at
least one egg would merge with one sperm and make an embryo that would
attach to the uterus and grow into a baby. Jillian was the result. In
case it didn't work, the doctor took the remaining 20 eggs and attempted
to fertilize them outside my body (invitro fertilization). 19 of the 20
fertilized, and those embryos were frozen. It would be another 10 days
before I took a pregnancy test, which (by the way) initially showed I
was NOT pregnant. A week after that, a home pregnancy test showed I was.
Therefore, the back-up plan wasn't needed, but we had paid for a year's
storage anyway and who knows, we might have decided to have yet another
one down the road.
When Jillian was only 10 months old, I found out I might carry a cancer
gene that would put me at much increased risk for breast or ovarian cancer.
I was tested right before her first birthday and got the results a few
weeks later: positive-87% risk of breast cancer, 44% risk for ovarian.
Doctors and genetics counselors advised me to have prophylactic surgeries.
So I weaned Jillian who was still breast feeding, had a hysterectomy a
month later, followed by bi-lateral mastectomies and reconstruction 6
weeks after that. We decided after the hysterectomy to "release"
the embryos. It seemed like a no brainer at the time.
Fast forward: almost 2 years later, Kinsey's diagnosis and Jillian's test
result showing she was NOT a bone marrow match. Everything we heard and
read states that a sibling match marrow or stem cell transplant is the
only "curative" treatment. The drug regimen Kinsey is on can
work but frequently the disease relapses following it. A number of other
complications, short- and long-term can follow. We have been told by doctors
here and in Albuquerque that Kinsey could still need a transplant a year
from now, or several years from now-IF she doesn't need one sooner AND
perhaps even if she does get one sooner that fails. The BEST odds for
a non-sibling transplant are 54% and that is at this hospital. Other hospitals
show between 29 and 37% survival rate. With a sibling transplant, the
odds are as high as 90%! And so we had to ask the question, knowing the
odds were against it: do those embryos still exist? We called and were
told they did not. But then my friend Mary there called back to say YES
they were still frozen and fine.
Since determining that, we have talked with many doctors, a couple of
lawyers, and done a great deal of soul searching. My sister was willing
to try to carry a child and we all knew the odds were first against her
getting pregnant and second against producing a perfect match-about 25-30%
chance of each. The deciding factor for Audrey: "I'd rather raise
3 or 4 children than one." For me: "I do not want to look back
a year or 10 years from now and say, 'There was something I could have
done that might have made a difference and I didn't do it.'" And
so while we have battled this disease in so many other ways, this back-up
plan effort has been going on behind the scenes for the last 3 months.
Initially, it took a great deal of fact-finding to determine if my sister
should travel to where the embryos were (Tucson) or if the embryos could
travel to her. For about $1600 and days of phone calls to find a "shipper"
(container), they could be and were shipped to Louisville. One Sunday
afternoon, I sat on the playground of UNM Hospital participating in a
conference call with the Louisville doctor who will perform the procedure
tomorrow. Contracts HAD to be drawn up, reviewed, changed, finally approved,
and notarized. Teresa had been taking shots and wearing patches and taking
pills for a month to prepare her body for this procedure and maximize
the chances of it working. But still-the embryos had to be thawed. There
were 19 but they were in 3 straws and all in each straw would be thawed
at once. Generally, about 50% survive thawing and so they warned us that
none might survive or that if only a couple did, they would need to thaw
2 or all 3 straws to get enough for one procedure. They like to implant
4 (just as I had with Kinsey and Jillian) but will sometimes try as many
as 6 to slightly increase the odds of one taking. There is a 20% chance
of twins and a 5% chance of triplets IF pregnancy occurs which is against
the odds.
Yesterday, they thawed the first straw of 7 embryos. All survived!
But one looked unlikely to continue multiplying cells. By today, each
one should have continued multiplying cells so that there were twice as
many (I think). Anyway, 4 did and the two others did better than that.
The one unlikely candidate didn't make it. Bottom line: there are 6 viable
growing embryos available to implant tomorrow. The number actually put
in will be up to the doctor and my sister. She says she's going for triplets
to increase the odds of a match. Audrey says she's going back to work
and I can stay at home to raise them all. I asked her tonight what scared
her more: Teresa getting pregnant or not getting pregnant or how we were
going to pay for it all or the possibility of multiples or? She said it
ALL scared her, but reiterated that we have to do everything we can.
I tell all of you this on the eve of this event for two reasons: this
"journal" has been raw and unedited (with the exception of Audrey's
occasional proofing). It has been what is true and real, the good, bad,
and ugly of it all. And so this is a part of it, a part we didn't know
would or could actually go forward and now that it is, we want to share
it- knowing this is as far as it may go. And second, your prayers and
good wishes have brought us many good things so far, so please think about
my brave, wonderful little sister tomorrow, who at 9 a.m. EST may alter
the course of our lives greatly. And think about the potential little
Morrison who could at worst bring new love and life into our family and
at best do that AND save his or her big sister's life at some point.
There is so much more to all of this that I haven't gone into like the
point at which a fetus can safely be tested, the point at which (in some
states) cord blood with sufficient stem cells for a transplant can safely
be harvested without harming the baby, the odds of a 5 out of 6 match
which would still be far better than ANYTHING they have been able to find
in the national and international registry. The fear that even though
Aplastic Anemia is not genetic, I know there is a 50% chance that any
child of mine could carry the gene mutation I have (much worse for girls
than boys). And being told that they will have much better options 20
years from now than I did is only partially comforting. And there is so
much more... One doctor in Albuquerque said to us, "Hey, listen,
producing a child just to save another child is a serious thing and not
something you enter into lightly." I stopped her and said, "Hey,
listen, there are three areas of concern here: the legal/moral/ethical;
the financial; and the medical. I only need you to tell me about the medical."
I simply wanted to know the odds that Kinsey would need a sibling transplant
and how likely such a transplant would be to save her. We have not entered
into this lightly. We have had many debates and doubts and ultimately
complete agreement and commitment. One thing several people have asked,
"Would you resent a baby if he or she were not a match?" Of
course NOT!!! We don't resent Jillian for not being a match any more than
we resent Kinsey for getting this disease. Should we be blessed with another
child, we will love him or her and provide a wonderfully safe and secure
and loving home with TWO great big sisters to play with. We just sort
of wish we hadn't donated all our baby stuff, but those are details and
details we can deal with- like how do we get all this Milwaukee stuff
back to Albuquerque: give us that problem!
Finally, I want to thank my wonderful little sissy who has truly come
through for us in a BIG way. This has not been an easy process so far
with lots of doctors appointments, daily shots and medications, and other
sacrifices too personal to mention. We also appreciate her significant
other: Butch, who has been very supportive. Her three children: Brandon,
Brittany, and Payton who don't quite know what to think of all this (Payton
doesn't understand why they can't keep the baby if there is one, at least
for a while. Note to Payton: Audrey says we can negotiate) but still are
all for it.
And last but certainly not least: Dr. Noel, her boss, who has been tremendously
supportive, has even given her some of her (larger needle) shots and has
allowed her to take necessary time off work. I understand he even drew
a smiley face on her butt yesterday to help Butch who was giving her today's
shot find the right spot. He joins the growing group of people Kinsey
has never met who are helping to save her life, and we thank him for that.
I want to also thank Nancy, my step-mother for her tremendous efforts
in the last week to give her platelets to Kinsey. She has made almost
daily trips to the blood center, where she has twice had veins torn and
twice been sent home to pump up her iron- a task she took on with a vengeance.
Audrey, Aunt Ann, and Aunt Janet have all tried but were CMV positive
and therefore ineligible. My nephew Sean, too, is willing but has been
on antibiotics and will not be available to try for another two weeks.
As Kinsey is still needing twice weekly transfusions of platelets, this
is a critical issue and we continue to struggle with it, hoping to find
her a single (or at most two) donor. Grandma Nancy will try again on Tuesday
(Kinsey has gotten one transfusion from her already), but if any of you
are possible and willing donors who want to help us create a back-up plan,
just call your local blood center and go donate once. You will find out
if you are CMV negative or positive (76% of adults are positive), if your
counts are good, iron, etc. You would also know how well you tolerate
it, how good your veins are, and if it would be something you would be
willing/able to do up to twice a week. The worse thing that could happen
if you were able to donate but didn't end up giving for Kinsey is that
you would help save a stranger's life, just as so many strangers have
helped save hers.
Some of the greatest gifts of my life have come during this awful time
period since March 21 and many of them from strangers. My life feels so
much more full of joy and it is merely because I appreciate the joy in
a way I never knew how before. I think that's why my 40th birthday has
been the best. I realize in the midst of this bad stuff how truly lucky
I am and how blessed. Ann said tonight after spending a couple of hours
with Kinsey that in her almost 60 years those hours would always stand
out and be treasured. I know that feeling now. I do, so well. I understand
it in a way that I think most parents and family members of healthy children
cannot.
Kinsey is a very special little girl, so wise beyond her years, funny,
entertaining, insightful, and inspiring. So has always been those things
but she, too, has a greater appreciation for life and a deeper sense of
what's important. It shows. And she is a delight (most of the time) to
be around as is her little sister. The gift yesterday of 660 neutrophils
was phenomenal! And the gift of the memory of watching my children laugh
and run and play with their cousins and aunts was one I will cherish,
too. I thank all of you who came for that! Everyone always tells you to
take pictures of events you don't want to forget and I did. But just watch,
too. Engage. Participate. Appreciate. Cherish. Enjoy. Every minute, and
don't complain if it rains or is too hot or too cold. So what? Enjoy.
Karen, Audrey, Kinsey, and Jillian
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