Well
the "big" week is drawing to a close. The embryo transplant
went well, but we won't know if it worked for another week. Teresa, my
little sister, has been a real trooper and actually argued with the doctors
to implant more than they wanted to in an effort to increase the odds
of success. Because there were 2 eight-cell embryos, 1 seven-cell and
one five-cell (all over 6 are considered very viable), they wanted to
implant no more than the best three. She argued for more and they compromised
on four (the same number I had when I got pregnant with Kinsey and 2 1/2
years later Jillian). Just before they implanted them, the one 5 cell
turned into a 6.
The odds are still against pregnancy on the first try and against more
than one baby should she get pregnant. The odds of a perfect HLA match
for Kinsey are about 25 percent for any one sibling, about 25 percent
for a zero match, and about 50 percent for a half match (what Jillian
and I both are). So we wait and hope.
Our appointment with Kinsey's doctor on Tuesday was eventful in that we
got some pretty shocking news: he feels she needs to remain here another
6 to 12 months. We told him we knew he had no crystal ball, but based
on the information he did have and his best guess, we wanted to know how
long he thought she'd need to stay. He said 6 to 12 months with the very
best scenario being 6. We were expecting 2 to 4 perhaps. Not sure what
we were expecting, but we'd always talked about this in terms of being
here for the summer and so winter in Wisconsin never really factored into
our thoughts.
The doctor told us that the CAT Scan results were perhaps a little better
but technically the same. He said, because of that, he was afraid to do
anything to her meds as long as she was tolerating them. Her kidneys have
suffered some, but overall, he feels she is tolerating them very well
and the side effects are less risky than removal of them. Her neutrophils
continue to trend upward, remaining above 500 the last several days, but
as he pointed out, "she is on a lot of support." She is taking
two powerful drugs each day 12 hours apart to promote white cell growth.
Taking her off either right now would probably result in a sharp drop
of her white cells. Long term use of these drugs can contribute to cancer
risk, but again he said he felt the risk of side effects was less than
the need for the drug right now. As I explained to my dad tonight about
brushing Kinsey's teeth: we can't use a real toothbrush for fear of a
bleed. He said, "what do you use?" I told him the hospital provided
a low platelet toothbrush that didn't really clean her teeth very well.
I said, "She'll probably have rotten teeth but better that than bleeding
gums right now."
Speaking of platelets, she got them today from her Grandma Nancy. Nancy,
my stepmother, has been through Hell to give those platelets with almost
daily trips to the Red Cross blood center in Louisville. She has changed
her diet and gotten a complete physical. And after a few failed attempts
(either for low iron or a torn vein) they seem to have gotten the routine
down. They arrived in Milwaukee this morning JUST in time as Kinsey's
platelet count dropped to 6,000 (normal is 150,000 to 400,000). Nancy
is giving again tomorrow and Kinsey will no doubt need another transfusion
by Monday at the latest. We are so appreciative of Nancy's efforts and
the support she's gotten from my dad (who chases her around the house,
I understand, with black strap molasses for the iron boost). And we appreciate
her boss Kenny Carter as well, who has been very understanding and flexible
to let her off work to donate or attempt to donate several times. He joins
our growing list of strangers who are helping to save Kinsey's life. She
talks about all these people, too. She knows from friends and coworkers
of her family members to old friends of ours who've never seen her or
not seen her since she was a baby to total strangers who read about her
on the net or in the paper—she is daily getting love and support from
many, many people in many, many places. Again, thank you to all of you
who are among that network of angels who keep her afloat.
Her
red cell count dropped low enough today that they considered a whole blood
transfusion but agreed to wait until tomorrow since she has not been having
headaches or showing other signs of serious oxygen deprivation.
The bottom line from the doctor in the way of an update: "She is
progressing but slowly and with a lot of support." He is still hoping
for a full response to the drug protocol but still realistically believes
that may not happen. He says we have bought ourselves some time, a lot
of time, and because there is currently NO good donor, he would tweak
everything he can to avoid transplant. We talked about the possible sibling
match and he is hopeful as we are that that could become a reality in
time should she need it. He says, "She will declare herself in 1
to 2 years," meaning she will have responded or failed to do so.
Failure to do so would result in a transplant for sure. Success or failure
for the transplant would result in either a fairly normal lifetime with
little risk for recurrence (he says that doesn't usually happen with children
the way it seems to with adults) or eventual death due to rejection or
a resulting infection. For now, however, we are no longer in imminent
danger of a life threatening infection. It could happen, but is far more
unlikely with those 500 plus neutrophils. Again, most patients who have
not responded to this treatment in 3 months will not go on to respond.
Yet the average full response time is 4 months. That doesn't quite make
sense to me, but I argued that she was responding, right? Well, response
is defined by a neutrophil count of more than 500, no longer being transfusion
dependent (with a platelet count of at least 50,000 and a red hemoglobin
of at least 8, I think.) She currently has one of those three and seems
a long way from having either of the other two. Her three month mark is
coming up in a few days: July 1, but we are hoping her response will pick
up in speed in that fourth month with the red cells and finally platelets.
IF it doesn't work by 6 months (Oct. 1), he would consider a second round
of drug therapy with the rabbit serum (she's already had the horse serum)
and more cyclosporine, which he expects her to be on for at least another
year regardless.
As long as she can be managed without going into crisis, even though she's
very transfusion dependent, he will keep trying to avoid transplant. When
and if it becomes obvious that transplant is the only hope, we just hope
she has something better than a half match. Remember, right now I'm the
best she's got and a transplant from me offers about a 20 percent survival
rate. The survival rate with a matched sibling is as high as 90 percent.
Come on twins!!!
The GOOD NEWS from that conference was that even though he is not backing
down on any medications at this time, he will allow me to get additional
training and administer them at "home" so that she will begin
going to clinic 3 times a week instead of seven (except for the additional
days she may need transfusions). My training begins tomorrow morning and
continues on Saturday. He also said we could consider taking her on short
weekend trips as long as her platelets were high enough before departure
and I packed in a cooler all medications, plus pumps, tubes, and other
supplies. We are considering that for next weekend but know not to plan
anything and count on it at this point.
While we have been reeling from the news of 6 to 12 months and all that
the news means to us and our lives: my job, our house, where and how we
will live here, etc., we have also been dealing with trying to get to
the bottom of Jillian's mystery fevers every 4 to 8 weeks for the last
17 months. While the doctor we took her to was exploring 3 theories and
referred us to a Rheumatologist (appointment on the 10th), Kinsey's doctor
casually mentioned that it sounded like "cyclic neutropenia."
I called Jillian's doctor here to discuss and he argued that it did not
fit. He called Kinsey's doctor and called me right back to say, while
he didn't think it was likely, Dr. Margolis was the expert and it did
seem possible. The only way to obtain positive or negative diagnosis:
twice weekly blood tests for eight weeks. We started today. And she was
SO brave. I was so proud of her. Here is this little 30 pound, 3 year
old, saying, "Maybe this time it will only hurt a little bit"
and after breakfast, "Come on Mommy, let's go get my blood test over
with." I told her, "You are my hero." She laughed and said,
"I not a hero. You a hero Mommy." I said, "Do you even
know what a hero is Beanie?" She said, "A hero wears a really
big red thing on his back and it ties on his neck like this" and
she motioned around her neck, throwing her hands back to indicate a cape.
She went on to tell me that she didn't have a red one but a green one,
but didn't have it with her today.
When
it came down to the needle stick, she balked and said to the nurse, "Oh
please don't put that needle in my arm," and she cried a little,
but overall, she was a real trooper. She did keep telling me her arm was
broken the rest of the day. Kinsey told her it was too bad she didn't
have a broviac. Her reward: her own little CD player like Kinsey has.
Hers had to be, of course, pink. And tonight, they were sitting on different
beds with headphones on jamming to different tunes. Amazing to have these
little girls who seem so much older than they are in some ways and yet
still babies in others.
I have to tell you that yesterday, when I had the second conversation
with Jillian's doctor and he called me back to say she did need to start
the blood tests, I lost it a bit. I asked him about how serious cyclic
neutropenia was (it is characterized, by the way, by regular drops in
neutrophil counts to nearly zero). He said not to worry, we'd talk about
that IF that was the diagnosis. I said, "You can't expect me to sit
in ignorance for eight weeks wondering and then just be pleasantly or
miserably surprised by what this thing is." He said, "Well that's
like planning how to spend the money before you've won the lottery."
I said, "NO it is NOT like that." He said, "Well until
we find out what she has, just don't fret." I was crying by this
point and between sobs I said, "I have one child who has a life threatening
illness, a psychologist reminded me today that while she is better, there
is still a very real possibility she will die from it, and now you are
telling me my other child may be seriously ill but you can't say how serious
it might be just yet. I'm sorry, you cannot tell me not to fret. However,
I will deal with it just as I am dealing with Kinsey, so don't worry."
He said he'd have Kinsey's doctor call me because the truth was he'd never
made this diagnosis and didn't know a lot about it. Dr. Margolis didn't
call, but at 1 a.m. I emailed him along with Kinsey's pediatrician in
Albuquerque and her former pediatrician. I heard back from two of the
three so far with some words of comfort. Dr. Margolis says it is a "relatively
benign" disease and as Jillian appears healthy and has been mostly
healthy (with the exception of these fevers) for her life and the last
18 months particularly, he was not terribly concerned but just felt this
needed to be ruled out. He also reiterated that Aplastic Anemia is not
genetic and that whatever Jillian has he believes has no connection to
Kinsey. It would just be hard for me to buy that if what Jillian has deals
with neutrophils. I cannot believe a word I'd never heard of, a word no
one can even spell has taken on such extraordinary meaning in my life!
So with Jillian, too, we wait.
Kinsey, who is becoming so wise through this experience, shifted back
into her "Why? why? why?" mode last night.
"Mommy—why did God pick me to get Aplastic Anemia?"
I told her I really didn't think God worked like that, but she pressed
on so I said, "I don't know. Maybe he knew you'd be strong enough
to beat it."
She said, "Well then, why did the dragon (our incarnation of AA)
pick me?" Good question. I said, "Maybe the dragon knew how
frightened you are of medicines and doctors and hospitals and so he thought
you'd be easy to beat."
"Well, he was WRONG," she said. "I'm beating him. Kailee
and I are fighting the same dragon and we are going to win!" I reminded
her how many, many people she and Kailee both had helping fight that dragon.
She said, "Doctor Margolis is a lot smarter than the dragon, too."
"He sure is," I told her. "And we were smart enough to
bring you to him."
"But Mommy, it will never be the same, will it? No matter what, our
lives will never be regular again, never the same." I said she was
right but that they would perhaps be better because we have all learned
to appreciate each other more and love better. She said, "But Mommy
we ALWAYS appreciated and loved each other." She's right, but I told
her that we would always have our priorities in the right order now. We'd
never again worry about money so much or needing a better car or being
upset because it was raining. I told her that I had learned that no matter
WHERE we were or HOW we had to live, we would be okay as long as we were
together and that ALL that mattered was having a happy, healthy, whole
family. She said, "Like Ohana from Lilo and Stitch (the
latest Disney movie). It means family," she said, "and no one
gets left behind." "Yes, like that," I told her. "But
are we whole?" she asked. "Yes, we are happy and whole and soon
we will all be healthy, too." But we will never forget this lesson
no matter how long that is true. And what I didn't say is we will never
feel totally safe from losing any of those again, but that itself will
always ensure we will appreciate these things while we do have them.
She asked me if she would still be my baby when she was 100. I told her
she would indeed, but I would most certainly be dead. She said, "Do
you think I will live to be 105?" "Perhaps," I told her,
"but maybe only 100." Let's not get greedy.
The psychologist I met with yesterday told me Kinsey has talked to her
about dying several times and she said Kinsey most certainly knows how
close she came to it and that it is still a possibility. I started crying
and asked, "Does she seem afraid of it?" She told me Kinsey
was not, she didn't think, just curious. That she has a strong sense of
what Heaven is like and seems comforted by that. I could only nod. Kinsey
does not talk to us directly about that because she can see how upsetting
it is to us, but as I have shared with you, she talks about it indirectly.
She asked Audrey the other day if everyone had to be buried when they
died. Audrey explained the alternatives. She seemed interested but removed.
I don't think she thinks she (or we) will need to worry about that anytime
soon. I don't think so either. But I did tell Audrey, "I couldn't
figure out why Dr. Margolis was so upbeat telling us she will be here
another 6 to 12 months, and then it hit me: he didn't think she'd be alive
another 6 to 12 months a few weeks ago."
And so, we wrestle with the decisions we must make regarding our lives
and the impact of this news of such a long stay here, but we are certain
about two things:
1. We will stay and
2. The rest is easy, especially when compared to the decisions we thought
we might be faced with during this time. No one is suggesting we talk
to Hospice to help with these little details of LIFE.
Finally, I feel compelled to write that in re-reading my own writing,
I fear I've painted an ideal picture of a family who has learned so much,
been enlightened so much and been transformed that we love each other
and are kind to each other and appreciate each other fully each moment
of each day. We enjoy every moment of our lives together. While that it
true in a sense, it's not like that exactly. Those of you who call know
we have some moments every day when one or both children are screaming.
Living in a little room instead of a 2200 sq. foot house takes its toll.
18 hours of daily medication administration takes its toll. Sleep deprivation,
fear, and worry take their toll. Audrey and I argue sometimes about the
smallest stuff. We struggle to make each day a good one and to get everything
done that MUST be done and have a little time for the "fun stuff."
We try to keep people informed and try to thank those who love and support
us and show our appreciation. We DO appreciate the laughter more, the
little things, but we are sometimes more impatient and irritable. Audrey
said to the girls (very indirect) the other day, "Mommy never used
to raise her voice or throw things." I had just thrown a toy of Jillian's
across the room after she hit the computer with it. Audrey is right. Mommy
never used to do such things. We both get incredibly angry at Kinsey when
she fights about her medicines or throws a temper tantrum for seemingly
no reason. In the last two days, I have dragged her down the stairs, butt
bumping along the way (knowing she was probably getting bruised) and Audrey
has accidentally bloodied her lip while trying to get her pills down her
(an easy thing to do when pushing pills into the mouth of a child with
few platelets).
I was telling my dear friend Jill today about this and she said, "I
can hear it, even now, in the way you are talking to Jillian." I
had been trying to rush back here to Kathy's House to get one of Kinsey's
meds so it wouldn't be late (as she was waiting for her platelet transfusion);
Jillian was falling asleep and whining about a toy I couldn't find (it
was the very one I'd thrown across the room); I was trying to gather the
needed supplies, deal with Jillian, and talk on the phone and I was already
upset that the medication was late. I was tired. And I WAS talking to
Jillian with a very impatient, irritated tone. Audrey called me a Nazi
tonight. I am trying so hard to get this routine down so that we can accomplish
all that we must to keep her out of the hospital and yet ensure there's
enough quality of life left to make it worth it. I hated for her to take
her nap today after she was unhooked because she was wasting "free"
time. What ends up happening some days is, "Okay girls you've got
30 minutes to do whatever fun thing you want, now hurry and have fun.
Now." Squeezing it all in is a challenge. Not worrying about the
little stuff is hard. Not worrying about the big stuff is impossible.
But our lives and routines have gotten so much better. The improvement
in Kinsey's mental health alone is enough of a reason to keep her here
and not have her go back to NM or even start over elsewhere. She is trusting
people more. She enjoys hospital school and the control of knowing she
goes to the same room at the clinic and sees the same nurse (almost always).
She even draws her own blood and helps them with other things. That sense
of control and knowing what to expect make a huge difference and so I
try to create that security here, too, in this little room and bigger
house that is, for the moment, home. A bed time, rules, structure in the
chaos and uncertainty that is unavoidable. And I try to do more and better
each day to be the best mom I can be. One day I forget Jillian's vitamin,
the next I forget to brush Kinsey's teeth in the morning. I once even
forgot to flush with dextrose before saline with the only drug not compatible
with saline. It took three nurses to convince me I had not done irreparable
harm.
We are looking at this stay differently now. And I keep thinking that
it's no longer temporary enough to warrant certain exceptions to how things
should be. I want to figure out how to make living here as normal as possible.
And yet I cannot yet imagine how to do so. I told Audrey last night, "How
in the hell did we get here to this place in our lives, with one sick
child, maybe two, and possibly one (or more) on the way and we don't even
know in 9 months where we will be, where or if I will be working at that
time, how Kinsey will be. It's not like we're in a position to prepare
the nursery. Could a baby live with us at Kathy's House?" She just
shook her head, and then we remembered, "Details, details, details.
We can deal with such details."
| Previous | Next |