Isabelle at Home

Home Up The Initial Crisis The Transplant Isabelle at Home

 

This page provides updates sent out on Isabelle after her return home on November 6, 2006 from undergoing a Bone Marrow Transplant (BMT).

 

 

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
 

July 4, 2008

All-American Girl

July 10, 2008

Carousel at Seabreeze Park

July 10, 2008

Cruising at Seabreeze

 

 

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 room, 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 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

 

3/30/2008

Isabelle and Anna in Pink

4/3/2008

Sleeping Halfway Off the Bed

4/6/2008

Riding a Tricycle with Dad

4/8/2008

Posing with Anna

 

 

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

Day +518, 3/16/08

Isabelle watches Elmo

Day +518, 3/16/08

Happy but tired

Day +518, 3/16/08

Kelsey and Anna marking time

 

 

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

 

Bahamas #1, Feb. 2008

Bahamas #2, Feb. 2008

Bahamas #3, Feb. 2008

Bahamas #4, Feb. 2008

 

 

 

Kelsey sent out the following update on Saturday, February 2, 2008

Update on Isabelle Day +475

Hi All--

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

 

Day +459, 1/16/2008

Isabelle Fast Asleep

Day +465, 1/22/2008

Isabelle Enjoys Some Popcorn

 

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

 

Craig sent out the following update on Thursday, January 17, 2008

Update on Isabelle Day +460
 

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

Update on Isabelle Day +454
 
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

Day +438, 12/25/2007

Brighta Family Xmas Card 2007

Day +438, 12/25/2007

Isabelle Plays with Her New Stove

Day +438, 12/25/2007

Isabelle Cooking Something Up

 

 

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

Day +404, 11/20/2007

In the Hospital with Anna #1

Day +404, 11/20/2007

In the Hospital with Anna #2

Day +404, 11/20/2007

In the Hospital with Anna #3

Day +404, 11/20/2007

In the Hospital with Anna #4

 

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, 2007

Isabelle 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

 

Kelsey sent out the following update on Friday, October 5, 2007:

 

Isabelle Update Day +365

 

Hi All--

 

Well, we reached quite a milestone today!  One year!  We remember so vividly the infusion that occurred last October 5th at around 2:30 in the afternoon.  The heaping tablespoon of stem cells has worked hard to multiply and is now the source of about 98 percent of Isabelle's blood.  The other 2 percent is from Isabelle's old & defective marrow.  Over the next few months, we hope to see the new blood percentage increase to 100 percent. The doctors don’t know why she still has two percent old blood/marrow, but apparently this is not uncommon.  Provided this percentage does not go up (which could be a sign of graft rejection and other problems we were told not to even worry about), it should not pose a problem.  The doctors will continue to monitor this percentage as a precaution.

 

As you know, Isabelle had a bit of a setback in September.  She's recovering from this "episode" pretty well.  At this point we know that some of her immune-fighter "B-cells", for some unknown reason, started creating an antibody that attaches itself to her red blood cells (RBC) and leads to their destruction.  But since the outbreak of this problem the rate of RBC destruction has been greatly reduced by steroids, by an increase in her immune suppression medicine, and by Isabelle’s immune system beginning to self-regulate to get back on track. Part of this self-regulation involves Isabelle producing new baby RBCs at a greatly increased rate.  The doctors are hoping that this RBC destruction will burn itself out in a few months, and are slowly weaning her off her steroids.  Under the current regimen, she has not needed a transfusion since the middle of September.

 

Isabelle has gained 5 pounds in the last two weeks thanks to the steroids.  She eats ALL the time.  She even wakes up at night to eat.  Anyone who has ever been on steroids for an extended period of time knows all about this hunger.  Also, the steroids cause general swelling in the cheeks and tummy.  So, she's a bit chunky right now (see pics).  Her beautiful face is still there, it's just that her cheeks are taking over the world.  Her little belly button starts to pop out by the end of the day -- she basically looks, acts, and walks like a full-term pregnant baby.  But she's recently gained back many of the skills she had before going into the hospital this last time and we are hoping that she'll continue on a good developmental path. 

 

The steroids and increased immune suppression drugs have once again left Isabelle’s immune system vulnerable, and we were warned by Isabelle's doctors to employ all of the same cleanliness, germ-free safety rules of last winter.  So, anyone with an illness or anyone who is in close contact with an ill person cannot be around Isabelle or Isabelle's family.  We are once again facing the prospect of an informal quarantine heading into the cold and flu season.

 

When Isabelle’s steroid levels were at their highest, she was very agitated, unhappy, and hostile.  As the steroids have been reduced this has steadily been replaced by more and more bouts of laughter, smiles, and recently, hugs.  She loves playing with her cousins and with friends in the neighborhood.  She can really be engaged in play activities now.  We'll even look over and see her stringing beads or "reading" a book all alone. This would never have happened even 6 months ago.  Isabelle is more confident and willing to leave mom's side for chunks of time especially to play with the big kids.

 

At Isabelle’s one year checkup this week, we tried to step back from the details of her daily challenges and take a look at the big picture.  Craig asked Isabelle’s lead doctor how they would have viewed her current condition if granted a crystal ball around fifteen months ago when they first diagnosed her illness.  We were told that they are “ecstatic” with her progress and that we have every reason to be very optimistic about Isabelle’s prospects for leading a long, healthy happy life.  Of course, there are no guarantees, but in the grand scheme of things none of us have that.

 

Our family, friends, and neighbors continue to be wonderful to us.  Many, many meals were dropped off during our September crisis and Anna was welcomed and cared for by many a good friend.  We cannot fully express the extent of our appreciation to everyone for the prayers, pink mailbox ribbons, words of encouragement, and food offerings!  We apologize for any thank-you cards that were not mailed.  In our hearts, we thank all of you every day, we just don't always have the brain-power and dexterity to write an actual letter.  Please know that we are grateful, and that your continued prayers and positive thoughts and words of support are always welcome.

 

Love,

 

Isabelle, Anna, Kelsey and Craig

 

 

Day +356, 9/26/2007

Lady Bug

Day + 358, 9/28/2007

With Mom, Adirondacks

Day +359, 9/29/2007

Family Portrait, Adirondacks

Day +359, 9/29/2007

Fun in the Stroller

Day +359, 9/29/2007

With the Bailey Kids

Day +360, 9/30/2007

Light Reading

Day +365, 10/05/2007

Pretty in Pink

Day +0, 10/05/2006

The Gift of Life

 

 

Craig