Craig and Kelsey sent out the following update on Sunday, July
27, 2008
Update on Isabelle Day +651
Hi All --
Isabelle is doing much better, and we expect her to come home tomorrow. The
staph infection in her lungs was the only problem that showed up from the lung
biopsy, and there was thankfully no fungal infection.
We almost managed to spring her today from the hospital but they want to do a
test on Monday morning to make sure she doesn't have a blood clot in her
central line. This is just a precaution because there is a theory that
something like a clot could be housing the strep that got in her lungs since
this is second time she has had strep pneumonia in the past 6 months.
Her fever has pretty much gone away and she is still coughing but a bit less
often. She started eating better today and did some walking around on some
somewhat wobbly legs.
Both Kelsey and Isabelle are ready to come home.
Here's to a great week ahead.
Love, the Brights
Craig and Kelsey sent out the following update on Saturday, July
26, 2008
Update on Isabelle Day +650
Hi All -
We received some preliminary results back on Isabelle's lung biopsy, and no
fungus has shown up so far. They did find evidence of a staph infection in
the lung sample, one that appears to be a treatable fairly common variety.
The antibiotics she is on have not eliminated her fevers, however, so they may
need to tweak what they are giving her for it. The fevers do seem to be
occurring a bit less often, though. She got one this morning after not having
one overnight.
Isabelle has continued to be in quite a bit of discomfort from the drainage
tube installed after the procedure. That is supposed to be removed this
morning. She does seem to be feeling a bit better this morning and is
requiring less pain management.
If she continues to progress and they get the fevers under control, a
discharge around the beginning of the week could happen.
Here are some recent pics from better times.
Love,
The Brights
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July 4, 2008
All-American Girl |
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July 10, 2008
Carousel at Seabreeze Park |
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July 10, 2008
Cruising at Seabreeze |
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Craig and Kelsey sent out the following update from the hospital
on Thursday, July 24, 2008
Update on Isabelle Day +648
Hi All,
Today the doctors did a biopsy of Isabelle's lung tissue to see if they can
determine for sure what is causing her fever and cough. The scan results from
Tuesday had given more evidence of a possible fungal infection than prior
scans. The purpose of the biopsy was to confirm or rule this out, and if there
is a fungus, to identify the specific one so that the best medicine can be used
to fight it.
The procedure was done late this afternoon, using a small scope inserted under
Isabelle's rib cage. The surgeon used the scope to remove about a "boullion
cube" size piece of her lung tissue for further examination in the lab.
Isabelle was pretty miserable and was in quite a bit of pain from the biopsy, so
they gave her morphine to make her more comfortable. We should know more about
what they found sometime on Friday.
We have internet access here in Isabelle's rom, and the below photo was taken
with our Mac computer about 5 minutes ago.
We will keep you posted.
Love,
Isabelle, Anna, Kelsey and Craig
Craig sent out the following update on Wednesday, July 23, 2008
Update on Isabelle Day +647
Hi All,
Just a quick update on Isabelle. You will remember that last month she had a
recurrence of the hemolysis problem that required treatment with steroids and
a dose of a special med that wiped out the B cells in her blood. She
responded well to this treatment and it should buy her a number of months free
from further hemolysis issues. One of these days her immune system will
hopefully fix this problem on its own.
A few weeks ago Isabelle developed a cough and periodic runny nose. She
seemed to be fighting it off pretty well, without a drop in her white blood
cells or other immune system counts, but in the middle of last week she
developed a fever that has gotten worse in the past few days. She has become
very tired and cranky. Yesterday as a precaution her doctors ordered a CT
scan of her head and lungs on an outpatient basis. Today they called and
indicated that the scan showed something going on in her lungs, particularly
on one side. They are not sure if the problem is bacterial pneumonia or
possibly a fungus (you may recall we have had scares with the latter on
various occasions). Amazingly her lungs sound very clear.
The doctors wanted Isabelle to be readmitted to the hospital today to treat
this situation, and Kelsey and Anna took her back in this afternoon. Isabelle
has begun receiving IV antibiotics, and her medical team will consult with the
lung experts tomorrow to determine other potential treatment approaches. We
will keep you all posted on her progress.
Please remember her in your thoughts and prayers.
Love,
Isabelle, Anna, Kelsey and Craig
Kelsey sent out the following update on
Tuesday,
June
10,
2008
Update on Isabelle Day +604
Hi
All –
Well, we were on the verge of sending out one of those “all is well” updates
but waited just a tad too long.
Isabelle has been on a great run of good health since the flu bug that knocked
her for a loop back in March. She has been successfully weaned from her
cyclosporine, the main immune suppressant med she had been on since her
initial diagnosis of HLH two years ago next week. She was on a very low dose
of steroids to help ward off a recurrence of her hemolysis problem, and was
only on three meds in total. The swelling in her face went away and her furry
look receded into memory. She has had loads of boundless energy and tends to
run from place to place around the yard and in the neighborhood. All of her
key blood counts were progressing in the right direction as well.
Then, we sent her blood to the lab yesterday for her weekly workup, and the
results indicated that her hematocrit (red blood cell count) had dropped from
34 last week to 24 this week. A retest this morning confirmed that Isabelle
has had a recurrence of the hemolysis problem that first flared up last
September. With this problem, her “B-cells” produce an antibody that attaches
to her red cells, and then through a complicated process these red cells get
crushed in error by her spleen. In recent months, the problem had been
quieted down by the steroids and by administration of a drug called Rituximeb.
This drug is a targeted type of chemotherapy that wiped out Isabelle’s
“B-cells”, thereby preventing the chain of events that kicked the hemolysis
off. Her B-cells were just starting to recover from the last Rituximeb
treatment, and now the hemolysis has come back.
To
address this recurrence, Isabelle’s steroid levels are being increased, and a
new round of Rituximeb is starting tomorrow (three to four weekly infusions).
The doctors say that it may take a few of these rounds before Isabelle’s
system gets itself straightened out. She is also getting a red blood cell
transfusion tomorrow to get her counts back up.
Isabelle is not showing any symptoms of this latest setback, but we are all a
bit bummed out by the prospect of cranky, puffy, steroid-crazed Isabelle
coming back for a return engagement. We are hoping to have a consult with
Isabelle’s doctor tomorrow to make sure we are all in sync as to the best
treatment approach for this situation.
On a
very positive note, we have been in contact with Isabelle’s stem cell donor
via email, and had the opportunity to speak with her by phone this evening for
the first time. Isabelle personally thanked her! She is a wonderful and
caring person who was very happy to have given this gift of life to our
special little girl. If any personal characteristics of a BMT donor sneak
into the recipient, then Isabelle has been doubly blessed. Amazingly, her
donor is an MD/PhD student in immunology at a major west coast university [We
shamelessly requested that she and her colleagues look into Isabelle’s
hemolysis problem in their spare time]. We also discovered that we lived a
half a mile away from her when we were in Bethesda a few years ago and she was
studying at the National Institutes of Health!
We
will keep you all updated on Isabelle’s continued progress, and as always we
appreciate your continued thoughts, prayers and concerns.
Love,
Isabelle, Anna, Kelsey and Craig
Kelsey sent out the following update on
Thursday, April 10,
2008
Update on Isabelle Day +543
Hi All,
Just a quick note to let everyone know that Isabelle has made a good
recovery from the flu that had her hospitalized a few weeks back. At her
checkup this Wednesday, we were told that she would not need to come back in
to get checked for three weeks barring any unusual developments. Isabelle
has been fully weaned from her immune suppressant medicine, but is still on
a low dose of steroids to help ward off a recurrence of her hemolysis, the
problem that caused her red blood cells to get gobbled up. Her face is
getting less hairy and less swollen as a result of these reductions in her
meds, and she is starting to look again like the little girl we adopted.
She is in very good spirits, is getting her energy level back up,and is
talking up a storm. She has a devilish tendency to mis-treat her older
sister at times (whacked her with a portable radio yesterday), but is also
being less of a mommy's girl now that she is feeling better.
Here's hoping for more good days ahead. Thanks for your continued prayers
and support.
Love, Isabelle, Anna, Kelsey and Craig
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3/30/2008
Isabelle and Anna in Pink |
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4/3/2008
Sleeping Halfway Off the Bed |
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4/6/2008
Riding a Tricycle with Dad |
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4/8/2008
Posing with Anna |
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Kelsey sent out the following update on Wednesday, March 19, 2008
Update on Isabelle Day +521
Hi All--
The doctors surprised us a bit and sent Isabelle home yesterday afternoon.
With all of the viruses and other stuff floating around the hospital, they
thought it would be better for her to be here instead of there, particularly
since she has been stable for the past few days and Kelsey can
basically administer all of Isabelle's meds including IVs and shots
herself. Isabelle's counts are still very low and she has an appointment with
her main doctor at the clinic today, but it beats sleeping at the Strong
hotel. Isabelle is doing a lot of sleeping as she continues to heal. She has
resumed walking, with some pretty tentative steps.
Here's hoping for some warm weather soon and an end to the cold and flu
season!
Love, the Brights
Kelsey sent out the following update on Monday, March 17, 2008
Update on Isabelle Day +519
Hi All --
Isabelle had an o.k. weekend at the hospital. She ate a little food on Sunday
for the first time in quite a few days, and perked up a little here and
there. We got a few of those trademark smiles out of her. The doctors are
waiting to see if the cultures taken of her lungs late last week show anything
specific. Opinions among the members of her team are divided as to whether
she just has the flu or has the flu plus a fungal infection in her lungs. Her
white counts showed a slight upward tick but are still pretty low. Her cough
comes and goes but her breathing is pretty good. If she gets on a
more notable improvement trend, hopefully the doctors won't have to do surgery
to get at her lung tissue and find out for sure if she has a fungus. Isabelle
has not walked since the middle of last week, so one thing on the agenda for
today is to get her out of bed for a while. She has been occupying herself
with a steady dose of Elmo to deal with the monotony. Anna went in on
Saturday afternoon and stayed into Sunday, and got to spend quite a bit of
time with Kelsey.
We'll keep you updated as the week progresses.
Regards,
Craig
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Day +518, 3/16/08
Isabelle watches Elmo |
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Day +518, 3/16/08
Happy but tired |
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Day +518, 3/16/08
Kelsey and Anna marking time |
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Kelsey sent out the following update on Friday, March 14, 2008
Update on Isabelle Day +516
Hi All,
Isabelle appears to be once again facing some substantial perils. The virus
she got has now severely compromised her immune system, and she has few white
blood cells to battle off the virus or other opportunistic invaders. Lung
scans done at the hospital over the past couple of days indicate that she has
what the doctors suspect is a fungal infection in a number of places in her
lungs. They are doing some additional scans today to see if this or possibly
the virus has spread to other areas of her body. The doctors are also looking
at taking some samples of her lung tissue to try to find out specifically what
fungus she may have to best target medicines to treat it, although they went
ahead and started her on an antifungal drug yesterday. Her hemolysis problem,
where her red cells are getting gobbled up, has also returned in conjunction
with the virus, and she got a dose of blood yesterday to help counteract
that. Moreso than with many of her prior bouts with illness, Isabelle is
really pretty miserable and tired these days. She is not that symptomatic at
the moment, but this appears largely because symptoms such as fever and
congestion partly arise from your body attacking the problem, and her ability
to do that is pretty limited at the moment. Yesterday they gave her a drug to
help boost her immune response, and she got a bump in white cells out of
that. We will know more about her condition and treatment with today's
consultations and tests and will keep you posted. She is in for a hospital
stay that will likely last at least a week if not longer.
Thanks as always for your continued prayers and support.
Love,
Craig
Kelsey sent out the following update on Wednesday, March 12, 2008
Update on Isabelle Day +514
Hi All,
Well, our vacation to a remote island in the Bahamas was
great. We've been home for about three weeks now and are still wishing we
could go back.
The weather was fantastic and there was body surfing in big
ocean waves, snorkeling, fishing, boat rides, a trip up the island's
lighthouse, walks, beach-combing, a full lunar eclipse, fun with Anna and
Isabelle's cousins, and so much more. It was a much needed break.
Isabelle's health held up and even seemed to improve in the
warmer climate. We had her blood checked while we were there and her counts
looked good so we had no worries. She was a champion at wearing her
protective mask in the airports and on the planes. This really surprised us
because for being only two she is rather opinionated about what she wears.
Other travelers and airline staff really left us alone--we were sure they
were all wondering what terrible disease Isabelle was carrying. Normally,
when you're out with a baby or toddler, others look at you and smile or try
to make conversation about the youngster; in this case, it seems that most
people just wanted to look the other way. This was fine with us as it made
it easier to keep her isolated.
We've had a return to not only the cold weather but to the
cold reality of Isabelle's continued precarious health situation more
recently, however. About a week ago Isabelle got a cough and fever at about
the same time, and after treating her with antibiotics without success the
doctors concluded that Isabelle is fighting a virus. It has gradually
sapped her white cells and has heavily taxed her other immune system
components, and after the fever had subsided for a few days it came back
last night and today she had to be readmitted to the hospital. They had
previously held off on readmitting her out of concern about all the bugs and
viruses and other bad things she'll be exposed to there, but with the
ongoing strain on her system the benefits appeared to outweigh the risks.
She is getting additional fluids for hydration and IV antibiotics to
ward off infection, and they'll do some proactive testing to look for
potential problems in her lungs and elsewhere. That said, she pretty much
had a fever free day today and seemed to be doing a little bit better.
We will continue to keep you posted. Please keep those
thoughts and prayers and well wishes coming.
Regards,
Isabelle, Anna, Kelsey and Craig
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Bahamas #1, Feb. 2008
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Bahamas #2, Feb. 2008
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Bahamas #3, Feb. 2008
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Bahamas #4, Feb. 2008
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Kelsey sent out the following update on Saturday, February 2, 2008
Update on Isabelle Day +475
We have some good news to
report on Isabelle. She had her follow-up CT scan yesterday and her lungs
look clear. Apparently, there are still some areas that probably represent
the residual staph infection, but hopefully those will clear up as she
continues to take her antibiotics. There was no evidence of the much feared
fungal infection from a couple of weeks back. She was awake for the procedure
and very cooperative. They let me stay in the room with her and she was able
to lie face down on her blanket and hold my hands. The scan was quick and we
were out of there in record time.
The doctors will monitor her
lungs and continue to treat her for the on-going hemolysis. So far, it looks
like the tactic of killing off her B-cells is working. Remember, the
B-cells were the culprits responsible for the hemolysis and for the
proliferation of the Epstein-Barr Virus. It doesn't look like Isabelle
is actively hemolyzing right now and her EBV counts are way down. Both
super-good things. Over the next month or two, Isabelle's B-cells will mature
and re-enter as players in her immune system. If these B-cell misbehave as
their predecessors did, then they will get whacked, too. This "retraining"
will go on until her immune system gets it right. Coincidentally, this sounds
eerily like parenting--"Anna, you will continue to do these long division
problems until you figure it out, young lady!!"
We are hoping to go on a
long-planned vacation to the Bahamas in a few weeks. The positive results on
her CT bring us one step closer to paradise. Isabelle's doctor was not
initially a fan of this vacation but we've scoped out some medical care
options for blood work and she's coming around. We will be vacationing with
my dad and his wife, Peg (a nurse!!) and my brothers and their families. We
need this vacation.
Thanks again for the prayers
and well-wishes. We don't know how we'd get through all these ups-and-downs
without such fabulous friends... A big thank you to the students in Mrs.
Saunder's and Mrs. Shephard's classes for sending Isabelle and her family
get-well and Valentine's Day cards. This was amazingly sweet and we've spent
a good deal of time enjoying the cards over-and-over again!
Love, Isabelle, Anna, Kelsey
and Craig
Kelsey sent out the following update on Sunday, January 27, 2008
Update on Isabelle Day +470
Hi--
Well, this has been quite a January for the Brights. We will
end the month with a follow-up CT scan of Isabelle's lungs later this week
to see what we can see. They are planning to do this one with her awake
instead of under general anesthesia in order to see if she can more properly
inflate her lungs so there are fewer questionable areas. The hope will be
to rule out a fungal or other infection deep within her lungs. About the
only thing I know concerning CT scans is the need for the patient to lie
perfectly still (I've seen this on numerous episodes of "House") -- should
prove an interesting experience with our little 2-year old on steroids. I
mean, every parent knows how cooperative a 2-year old is, right? Especially
when they're in a room full of strangers, strapped to a table and scared out
of their minds, right? Just another day-in-the-life of Isabelle Bright.
Some good new to report is that the Rituximeb infusions that
Isabelle has been getting to knock out her B cells, a therapy designed to
both reduce her Epstein-Barr Virus (EBV) levels (because they attach to the
B's) and help stop the hemolysis, appears to be working. The EBV levels are
way down and her red cell count was up late in the week. The doctors are
continuing to wean Isabelle from her various immune suppressant meds to
further help her fight the various things that have managed to infiltrate
her system.
Isabelle's overall health has been generally good. We really
don't know from day-to-day what's up with her. She seems a bit tired on
some days and very upbeat and energetic on others. She still coughs
occasionally and she's been throwing up with some regularity. We're
hypothesizing that the latter is from her IV antibiotics. But, we do not
know for sure.
The rest of the family is slowly recovering from a stomach
bug. It hit Kelsey on Wednesday and Craig's mother on Thursday night.
Craig has had some queasiness, but no real action and Anna's been blessedly
healthy.
We finally let Craig's mother go home after around a month
staying here helping out. It was a blessing to have her here during this
busy month and we were loathe to let her go home! Our wonderful family,
friends and neighbors once again came to our rescue with help and meals.
Have we mentioned that we have the best neighbors EVER?
Thanks so much for your continued prayers and support.
Love, Isabelle, Anna, Kelsey and Craig
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Day +459, 1/16/2008
Isabelle Fast Asleep |
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Day +465, 1/22/2008
Isabelle Enjoys Some Popcorn |
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Craig sent out the following update on Sunday, January 20, 2008
Update on Isabelle Day +463
Hi All,
Well, it was quite a roller coaster weekend. The long and short of it is that
Isabelle has been diagnosed with a staph infection in her lungs that is very
treatable and has started antibiotics for that. The scan of her lungs done on
Friday cast doubt upon the previous scan's indication that she might have a
fungal ball and fungal infection. This has not been ruled out, but appears at
least less likely than originally thought. She came home today at around 5:00
p.m. There are no immediate plans to do any surgery, since it's not clear
there is anything to take out. The revised plan is to keep her on the course
of antibiotics for the staph infection and then do a repeat scan in two weeks
to see what her lungs look like at that time and reassess her condition.
From a broader perspective, there is an increased urgency to reduce her
steroid levels because the steroids have been the key factor in creating the
breeding ground for the bacteria and possibly fungii we have been encountering
of late. The hope is that this weaning of the steroids will not cause a
flareup of the hemolysis problem that has recently appeared to be on the wane.
Overall, we are breathing a bit easier heading into a new week, but still with
some possible storm clouds lurking on the horizon.
Isabelle has remained in great spirits throughout this latest episode, and is
very happy to be home.
We greatly appreciate everyone's continued prayers, good wishes and support.
Love, Craig and Kelsey
Craig sent out the following update on Saturday, January 19, 2008
Update on Isabelle Day +462
Hi All,
Isabelle was readmitted to the hospital on Thursday afternoon to begin
addressing the suspected fungal infection in her lungs. On Friday morning
they did a bronchial scope procedure to take tiny samples from different areas
of her lungs to try to determine what type of fungus she might have. The one
they were most suspecting is called Aspergilla, which is a more problematic
one to treat. A very preliminary read on this test, which has not yet been
confirmed, suggests that she may have a different fungus, I believe known as
candida, which could be more treatable. But its really too early to tell at
this point and we are still getting up on the learning curve as fungii go.
Late in the day Friday they repeated the CT scan of Isabelle's lungs done a
week ago, and placed her in different positions to try to get a better look at
some suspicious areas to see if they are part of the fungus problem or maybe
something else (or nothing). We may not hear back on that for a couple of
days.
The infectious disease, surgeons, and hematology/oncology doctors will be
consulting over the next few days to determine the best course of treatment,
including whether to start her on antifungal medicine (which is highly
likely), which one to use, and whether to remove the fungal ball surgically to
get a firm diagnosis on what that consists of. We understand that the ball
could potentially be treated with just medicine if they know for sure what it
is made of, but a fungus is slow to grow and slow to go so it will be a long
treatment process.
The doctors have indicated that how each patient responds to a fungal
infection is very unique to the health issues and overall immune system
condition of that patient. Isabelle is somewhere between a patient who has no
immune system just after transplant, where the ability to fight a fungal
infection is pretty limited, to a person with a healthy immune system, who
would not have gotten such an infection at all. One key is to get her off of
the immune suppression medicines, particularly the steroids, as soon as
possible so that her body can better fight this off, but she continues to have
problems with hemolysis that make tapering these immune suppressors down
quickly problematic at this point. So the doctors will have to continue that
balancing act as we move forward.
Isabelle is in pretty good spirits and aside from a periodic cough is not
showing any impairment from the lung infection. She was a bit pale
yesterday because her hematocrit had drifted downward, so she may be getting
some more blood over the weekend to address that matter. Anna is holding up
well dealing with this latest hospitalization after getting over the initial
news that Kelsey and Anna were heading back to Strong. Craig took Anna and two
friends to see Disney's High School Musical on Ice last night, and Anna is
doing a sleepover tonight at the hospital.
We will keep you up to date as we learn more. Your prayers and support,
including those directed to healing Isabelle's lungs, are helpful, sustaining
and much appreciated during these challenging times.
Love,
Craig and Kelsey
Hi All,
Isabelle is doing better overall, although the increased steroids are
causing her to puff up again and to be very irritable. She has been on IV
antibiotics since late in the day on Wednesday, and her fever has not
returned. She received blood on Thursday to raise her hematocrit (red blood
cell) count in response to her continued hemolysis. Today in the afternoon
she received general anesthesia so they could do a detailed scan of her
upper body and organs to check for evidence of fungal, sinus, or other
infection. While she was out, the dental team fixed a few large and a
couple of small cavities -- her baby teeth got pretty beaten up by the chemo
she received last year. She was very miserable after she woke up around
5:00 p.m., and seems very sore around her mouth from the dental work. I
took Anna to the hospital to spend the night with Isabelle and Kelsey this
evening. The doctors want to see what Isabelle's hematocrit level is
tomorrow, and they will decide whether she needs more blood, take care of
that one way or the other, and hopefully send her home by the end of the
day.
Thanks for your continued prayers, good wishes, words of encouragement, and
support.
Love, Craig and the Ladies
Craig sent out the following update on Friday, January
11,2008
Hi All,
Isabelle is doing better overall, although the increased steroids are
causing her to puff up again and to be very irritable. She has been on IV
antibiotics since late in the day on Wednesday, and her fever has not
returned. She received blood on Thursday to raise her hematocrit (red blood
cell) count in response to her continued hemolysis. Today in the afternoon
she received general anesthesia so they could do a detailed scan of her
upper body and organs to check for evidence of fungal, sinus, or other
infection. While she was out, the dental team fixed a few large and a
couple of small cavities -- her baby teeth got pretty beaten up by the chemo
she received last year. She was very miserable after she woke up around
5:00 p.m., and seems very sore around her mouth from the dental work. I
took Anna to the hospital to spend the night with Isabelle and Kelsey this
evening. The doctors want to see what Isabelle's hematocrit level is
tomorrow, and they will decide whether she needs more blood, take care of
that one way or the other, and hopefully send her home by the end of the
day.
Thanks for your continued prayers, good wishes, words of encouragement, and
support.
Love, Craig and the Ladies
Craig sent out the following update on Wednesday, January
9, 2008
Update on Isabelle, Day +452
Hi All,
We wanted
to let you know that Isabelle went back in the hospital today. The immediate
cause was a fever of around 103 F that hit her overnight. She was really
fussy last night so the fever did not come as a surprise. She has been
dealing with a pesky cough for about a month, and it seemed worse this
morning. They did a chest X-ray to rule out pneumonia, and so far that looks
good. So they are going to start her on antibiotics and see if any bugs
culture from the blood that was drawn today.
About a
week ago, Isabelle showed some paleness and was diagnosed with a renewed bout
of hemolysis, the same problem she had in September where her red blood cells
were breaking down. As with the original incident, the doctors increased
Isabelle's steroids (making her once again miserable) to calm down this
overaggressive immune system response and gave her some red blood cells. At
the same time, they noticed that her EBV virus counts were on the rise. This
was concerning because the additional immune suppression from the steroids
used to treat the hemolysis can enable the EBV virus counts to get even higher
and cause other problems. There is not a good antiviral drug for EBV, but
there is a round about way to get at the virus. EBV tends to attach itself to
B cells. There is a drug called rituximab that acts to kill the b cells in
your blood, and Isabelle has started taking weekly infusions to wipe her b
cells out. It will take these cells about a year to recover, which will
hopefully give her immune system a good opportunity to achieve more normal
functioning without having to deal with the EBV issue.
As one of
Isabelle's doctors said tonight, the challenge with her new immune system is
to strike a balance between keeping it suppressed a bit to avoid problems like
hemolysis, but not suppressing it so much that infection and other issues such
as viruses can run rampant.
It is
truly a delicate balance to strike.
When told
that her mother was back in the hospital with Isabelle, Anna wanted to know
why her Dad could not stay at the hospital with Isabelle instead, since her
"Mom is needed at home".
Please say
a prayer for all of the Brights on your list tonight.
Love,
Craig and
the Ladies
Kelsey
sent out the following update on
Thursday, December 27, 2007
Update on Isabelle Christmas Edition Day +440
Hi All --
We hope
you are having a happy and healthy holiday season. Isabelle is generally
doing very well. She is continuing to be weaned off of the steroids, which is
giving her immune system a chance to recover and better fight off her
viruses. The swelling in her face has gone way down, and she is in great
spirits. She is a big fan of Santa already, and her favorite phrase is "moow
peasents..." She especially likes her new Kenmore stove and refrigerator from
Grandpa Tom and Peg. She and Anna are fighting off nose colds at the moment,
so we're being vigilent about that. But all in all, much to be thankful for
this Christmas. Thanks for your continued prayers and support, and have a
Happy New Year!
Love,
Isabelle, Anna, Kelsey and Craig
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Day +438, 12/25/2007
Brighta Family Xmas Card 2007 |
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Day +438, 12/25/2007
Isabelle Plays with Her New Stove |
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Day +438, 12/25/2007
Isabelle Cooking Something Up |
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Kelsey
sent out the following update on
Wednesday, November 28, 2007
Update on Isabelle Day +412
Hi All--
We hope that
everyone had a great Thanksgiving! We brought Isabelle home from the hospital
on Wednesday evening before Thanksgiving at around 7:00 p.m. We certainly
enjoyed being home -- both for the actual day and for our family's celebration
on Saturday. The food was remarkable as always. With the abundance of food
before her, Isabelle--with her bizarre taste buds--wanted to eat only the
cucumbers from the salad and spicy olives. Go figure. She was in her element
all weekend surrounded by her adoring family as they lavished her with
attention. Craig said she'd be perfectly happy in a house with 10 kids or
more. She absolutely loves her cousins--big squeals of happiness and much
time spent away from "MAMA!!!" made for a perfect weekend.
On the health
front, we continue to see her cell counts improve as her body bounces back
from her latest setback, which in hindsight now appears to have been almost
exclusively the result of that nasty bacterial infection. Her doctor is
continuing to wean her from the steroids and the hemolysis seems to be under
control. Isabelle is being closely monitored for any sign that this might
flare up, but so far so good. Also, her body is busy fighting off the
Epstein-Barr virus with some success. From the looks of her labs, both the
CMV and the EBV viruses peaked at the end of October and have drifted down or
remained the same so far in November. We are cautiously optimistic at this
point and continue to say a grateful thank-you to God for watching over her.
Thank you all
for your continued prayers and support.
Love,
Isabelle,
Anna, Kelsey and Craig
Kelsey
sent out the following update on Tuesday, November 20, 2007
Isabelle Update
Day +404
Hi All--
Isabelle is in bed taking a little nap so here's the latest on her
infection. She's been fever-free for the last 2 days and has not shown any
positive growth in her bacterial blood cultures since her admittance on
Saturday night. Also, they have determined that the infection is sensitive
to a few different antibiotics. If all goes well with her blood counts,
then we might be able to leave here tomorrow! I'd have to give the
antibiotics to Isabelle at home (through her central line) and draw some
blood for labs on Friday, but it would be great to be home--a Thanksgiving
Day treat.
Isabelle has been in great spirits for the last few days and spends all of
her waking hours trying to charm the staff. She walks around and says,
"bless you" to those who might sneeze and "good" to those who ask how she's
doing. We also investigate all of the other patients (from a distance) and
check out everything that the nurses and techs do at their stations. I'm
even able to leave her with the nurses and techs to get some coffee in the
mornings and she's totally o.k. with that. She's definitely a different
baby from the one here last time. She's so much more confident and secure.
Let's hope it's not the steroids giving her a false sense of well-being.
I'm typing on the hospital's in-room "get well network" and the screen is
on the TV. In order to see the whole message, I had to reduce the size of
the test to teeny-tiny so I'm sot really sure what I'm typing...hope that my
editor finds all of the mistakes!
We have appreciated all of the well wishes from the vast Isabelle fan-base.
When Anna heard that we might still be in here for Thanksgiving, she said
that it would be terrible because Isabelle is the person that everyone
admires the most and who we are most thankful for . . . Well, I might buy
the first part, but I'm pretty thankful for all of my family and friends as
well as the little bundle sleeping so peacefully next to me . . . Have a
wonderful Thanksgiving.
Love, Kelsey and Family
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Day +404, 11/20/2007
In the Hospital with Anna #1 |
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Day +404, 11/20/2007
In the Hospital with Anna #2 |
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Day +404, 11/20/2007
In the Hospital with Anna #3 |
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Day +404, 11/20/2007
In the Hospital with Anna #4 |
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Craig sent out the following update on Sunday, November 18, 2007
Isabelle Update Day +402
Hi All,
After we spent Saturday night in the Emergency Room, the doctors found that in
addition to running a high fever, Isabelle's white blood cell count had
dropped from 12K to under 1K in just two days. Blood cultures then showed
that she tested positive for a bacterial infection, most likely something that
migrated into her blood from her gut. This is apparently fairly common with
immune suppressed patients, and the white blood cell drop is consistent with
her body trying to fight off an infection. Isabelle was admitted to the
Hematology/Oncology ward Sunday morning at 6:00 a.m. directly from the ER
for IV antibiotic treatment and for careful monitoring of her overall
condition. Isabelle's fever was kept a bay for quite awhile after it began
Saturday night, but it flaired up on Sunday afternoon and required Tylenol and
Motrin to quiet it down again.
As indicated in yesterday's message, there are other storm clouds lurking at
the moment, including the Epstein Barr Virus, which we're hoping does not get
worse and cause problems while Isabelle's body is fighting the bacterial
infection, and the risk that her hemolysis from September could recur as they
continue to take Isabelle off of her steroids and immune suppressants. She
also has a periodic cough of unknown origin, so they will be
repeating Saturday night's chest x-ray on Monday to try to confirm that
Isabelle does not have pneumonia -- her lungs sound clear, though. The
doctors characterized Isabelle's overall immune system condition as fragile at
the moment with everything it is battling, but hopefully treating the current
infection will move her forward on a positive path. Isabelle has to stay in
the hospital at least until all cultures for the current infection are
negative for a while, and until her white blood cell and other counts have
recovered, which has a good chance of taking us into and through
Thanksgiving. Kelsey has settled back in with Isabelle for another stay at
Strong Memorial, and Anna is keeping a stiff upper lip while helping me to
hold things down on the home front.
Your continued prayers for Isabelle's quick recovery from all of the above
would be greatly appreciated.
Love,
Craig and the Ladies
Craig
sent out the following update on Saturday, November 17, 2007Isabelle Update
Day +401
Hi Everyone,
Just a brief update on Isabelle. She has continued to respond well to the
steroids and immune suppressants, and the hemolysis problem that hospitalized
her in September appears to have been arrested. She has been in very good
spirits of late and has been feeling very well overall. However, we heard a
couple of weeks ago that she has the Epstein Barr Virus, which most of us have
without issue but which can cause problems in people with weak immune
systems. The plan has been to wean her off of the steroids and immune
suppressants more quickly to allow her system to mount a better attack against
the virus. Tonight she spiked a 103 fever pretty quickly and we are taking
her into the hospital for some tests to try to get a better handle on whether
this is the Epstein Barr Virus starting to cause problems or something else
such as an infection. The problem with EBV is that it does not respond to
drug treatment very well like some other viruses, so this needs to be watched
and monitored very carefully. It can lead to significant complications.
Please keep Isabelle in your thoughts and prayers.
Love, Craig and Kelsey
