The Initial Crisis

Isabelle is Heading Back Into the Hospital to Undergo a Bone Marrow Transplant.

Craig and Kelsey sent this update on Isabelle on September 21, 2006:

Hi!

Sorry for not putting out an update in a while. We have been waiting to find out when Isabelle is going to be admitted for the bone marrow transplant (BMT). We learned late last month that her disease is still active and the only curative measure is the BMT. We knew that this outcome was a distinct possibility, but it still caused a gut check when it was confirmed.

Isabelle is going to be admitted to Strong Memorial Hospital's Bone Marrow Center this coming Monday. On Tuesday, she will be going into surgery to put another central line in her chest. Isabelle will need at least 2 "ports" for her medications during the BMT and she currently only has one line in her chest. She will also start a tough pre-transplant regime on Tuesday. This involves about a week of super-intensive chemotherapy in order to destroy her current bone marrow and make room for the new marrow produced from stem cells provided by her donor.

We really don’t know much about Isabelle’s donor, except that she is a healthy, 27 year old woman of Chinese ancestry. There is a good chance that she is an American but we do not know for sure. We can seek to contact the donor one year after the transplant to thank her for her efforts on Isabelle's behalf, but not before then. Although she is not related to Isabelle, the donor’s blood system matches Isabelle’s system on all of the key points that medical research has shown to be relevant to a successful transplant.

One of the scary things about the process is that in about 20 percent of the cases, despite all the identifiable components being matched between the host and donor, moderate to severe rejection of the new marrow occurs (a condition known as graft-versus-host disease). This condition poses significant threats to Isabelle’s long-term prognosis, along with the threats of infection and other complications that come with such a drastic procedure involving a period without an active immune system. The good news is that Isabelle is very young and resilient and is going into the transplant in very good physical condition, all things considered.

Stepping back from the gravity of the situation, the BMT process is really an amazing thing. After they destroy Isabelle's bone marrow, she will temporarily receive whatever blood products (mostly red blood cells and platelets) she needs through her central line. The donor's stem cells will likewise be transfused through her central line like any other blood product without any great drama or fanfare. There is no need to inject the cells into her bones.

Stem cells are pre-programmed to figure out where they need to go. Although Isabelle’s bones will be depleted of marrow, the new healthy cells will go to her bones and should begin to set up shop in Isabelle’s marrow (a process called "engraftment") after about 2-3 weeks. These cells will literally create a new, healthy immune system and blood production facility within Isabelle’s marrow modeled after the healthy system of the donor. At about the three week mark, we should start to see some of the donor's cells in Isabelle's blood stream. We will be excited about engraftment because this is a key first step setting the stage for Isabelle to begin producing new blood and immune cells. Believe it or not, sometime in the conversion process Isabelle’s blood type will actually change over to that of the donor, which is different.

We don't want to get too far ahead of ourselves. At this point, we are looking at 8-9 days of heavy chemotherapy plus a surgery before the infusion of stem cells occurs at “day zero”. Kelsey will be going into the hospital with Isabelle this coming Monday. She will probably stay there with Isabelle throughout the process, which if all goes very well will involve a hospital stay in a fairly isolated environment for about 5 weeks. After Isabelle comes home, she will continue to be at risk for problems and complications over the succeeding months and beyond, but with those risks gradually diminishing. We'll keep you updated on her ongoing progress.

Initially, Kelsey's dad, Tom, will come up and stay at the house to help with Anna. Speaking of Anna, she is having some well placed anxiety about the whole process. She is not looking forward to having her mom and baby sister move out of the house again -- especially since Isabelle has been such a joy to have around lately. Gone is the screaming, fussing baby who was so sick in June and July. God has replaced her with a wonderful, smiling child that we love and adore.

Many of you have asked how you can help, and we ask that you please continue to pray for her, for us, and for her caregivers at the hospital.

The following website provides a good summary of the BMT process:

http://uuhsc.utah.edu/healthinfo/adult/Hemat/bonemarr.htm

Warm Regards,

Isabelle, Anna, Kelsey and Craig

Craig and Kelsey sent this Update on Isabelle on August 28, 2006 [As of 9/2/2006, we're still waiting for the results of this week's bone marrow biopsy, and Isabelle's doctors are still moving ahead with plans for a bone marrow transplant pending review of those results and continued consultations with us and their colleagues]:

Hi All--

It's Monday night, and on Sunday evening we returned home from another stay at the hospital. Isabelle developed a fever last Wednesday evening and due to her low infection-fighting ability, the doctors wanted her back in the hospital for some IV antibiotics. We were admitted to the same unit we had been in previously after going first to the ER. Isabelle was a much better patient this time--smiling and carrying on with the staff. At one point, one of the nurses who had a lot of experience with Isabelle the Miserable said, "who is this baby and what have you done with Isabelle?"

While in the ER, they took some blood in order see if there were any bacteria in Isabelle's system that may be to blame for the fever. The blood cultures over 48 hours, so that's usually the minimum stay for someone in her position. They also gave Isabelle a steroid and started her on the antibiotics. Her fever left for good that evening. The cultures ended up being negative, but she was still without the ability to fight off infection and some other blood counts were low, so they kept her there for a few extra days.

During her stay, she received 2 red blood cell infusions and an immunoglobulin infusion. Due to the medicines that she's on, Isabelle has really needed help keeping her blood cells at acceptable levels.

Craig and I met with Isabelle's doctor on Sunday afternoon to discuss her current condition and next steps. As you may remember, Isabelle had just entered the "weaning dose phase" of her treatment with the idea that we wait and see what happens when her immune system is not suppressed any longer. The doctor recently received some test results that make the continuation of this weaning phase irrelevant because we are almost assuredly headed for a bone marrow transplant (BMT) in the next few weeks.

There are a number of indicators that would suggest that Isabelle's HLH is still active. As it turns out, Isabelle has a mutation on one of the genes that were tested for HLH. The mutation has not in the past been implicated directly as causing HLH, however, the mutation most assuredly causes problems of some kind in the bone marrow. Also, because there are so few cases of HLH, it's hard to know all of the underlying genetic issues surrounding the disease. Second, Isabelle got the above-named fever with no know cause just a week after being weaned from the steroids (remember sporadic fevers are an HLH symptom). Third, Isabelle's trigycerides and ferritin were high. These levels can be associated with HLH activity. Fourth, Isabelle had a "flow cytometry" test done which showed abnormal results even when she was still getting the full treatment regimen prior to the start of the weaning. Fifth (and what might be the clincher in the circumstantial evidence that she still has active HLH), a test result for her level of soluble IL2 receptor was so high that it was literally off the charts. Probably more than the other evidence cited above, the receptor test looks for specific byproducts of HLH activity. The testing range was from 0 to 7500, with 60 being optimum. Isabelle's results were so far over 7500 that the lab could not get an accurate count. Aside from HLH activity, there is no reason for these numbers.

The only evidence we don't have of active HLH is documentation of actual macrophages engulfing her blood cells. We will likely get this evidence following a bone marrow biopsy this week (the last sample did not show macrophages, but this was a limited test and the sample was not a very good one). Assuming the biopsy is positive, then we will have conclusive evidence that Isabelle's body has not been able to control the disease on its own on weaning doses of the meds, which is effectively confirmation that she has the familial, or genetic, form of HLH. That form will not go away as long as Isabelle has her current marrow. In conjunction with this testing, our doctors here are consulting with a leading expert on HLH in Cincinnatti to confirm the meaning of all of the above data including the need to move to a bone marrow transplant as the next step.

We are not sure precisely when it will take place. Most likely it will be in the next few weeks--it might be as early as 2 weeks away or as long as 4 weeks. Among other factors, the timing depends on the donor's availability (they have a strong leading candidate identified), space availability in the transplant unit, and Isabelle's general health. Right now, Isabelle is outwardly very healthy, which is the best time to do a transplant. Her good health and demeanor are the result of the fact that, although the disease is trying to rev itself back up within her body, the immune system suppression meds (mainly the cyclosporin) are keeping it in check.

Isabelle's expected hospitalization from the BMT will depend on how her recovery goes. If she sails through (keep the prayers coming), then we will be in for about a month to 5 weeks. If she develops problems such as rejection, our time in the hospital will be considerable longer than 5 weeks. Rejection can also develop later after she comes home.

We appreciate your continued thoughts, prayers, and support as we move toward this next stage of Isabelle's journey. We are cherishing these relatively calm and very enjoyable days with her at home in the interim.

Warm Regards,

Isabelle, Anna, Kelsey, and Craig

Craig and Kelsey sent this Update on Isabelle on August 16, 2006:

Hi All--

We've been home from the hospital now for a few weeks. I'm pleased to say that I'm not sure how many days or weeks we've been home, whereas at the hospital I could tell you exactly how many days/weeks we had spent there.

Isabelle has been doing very well at home. She had a fever the first week we were home, but she successfully fought off whatever was bothering her without another hospitalization. This was really good news because the thought of going back in so soon after being home was somewhat disheartening.

We have been trying to be good about hand washing and/or using the hand sanitizer. We use it so much that Isabelle has actually started to mimic our hand washing motions. Pretty cute stuff. Speaking of pretty cute, Isabelle has been in the best spirits of late. For the last week, she has been smiling, laughing, and making cute faces all the time. The other day she learned to wave. She is still not yet crawling but is thinking about it. This is a major departure from her usual cranky self and it couldn't have been a more welcome change. After about 2 months of sickness and fussiness, seeing her smile on a regular basis has been wonderful. But she can still cry non-stop for a half hour or more when she is separated from Kelsey.

We also had a breakthrough of sorts on the sleep front. After babying Isabelle by getting up with her every time she cried in the night, we took the doctors’ advice and started treating her more like an 11 month old in need of some training than a sick baby. Instead of picking her up, the strategy has been to give her reassurance when she cries at night but leave her in her crib. She has gradually moved in the direction of a normal sleep schedule, and only wakes up a couple of times during the night.

Anna continues to be a model big sister -- comforting Isabelle when she is upset, playing with her when she is happy, and taking on adult tasks such as assisting in administering her medicines and changing her dressing on her central line. Kelsey's mother Sheila remains a constant source of help and support with a wide range of responsibilities from cooking and keeping the household going (in addition to having hers on hold), to watching Isabelle, to helping with Anna, to ferrying Kelsey and Isabelle off to hospital visits (such as another round of chemo today).

Isabelle continues to do well on the HLH treatment therapies. We had a meeting with Isabelle's doctor last week and Craig asked outright how she thought Isabelle was doing so far. The doctor said that she has responded well to the therapies and that they are happy with her progress. We felt that this was good news as doctors are not in the business of giving false hope (we learned that the hard way when Anna was in the hospital).

In addition to talking about Isabelle's progress, we also discussed the next steps. As many of you may remember, the 8th week of treatment is when the HLH patient is retested for continued evidence of the disorder and when the weaning doses of her medicines begin. This week Isabelle had another bone marrow biopsy and a lumbar puncture. Tomorrow, she is scheduled for a CT scan and her final dose of weekly chemo. From that point on, Isabelle is on a "maintenance dose" of her meds. Her chemo goes to every-other-week and her steroids are reduced to scheduled pulses instead of every day. If it is apparent from this week’s tests that the disease is still active in Isabelle’s bone marrow, then we will proceed rather quickly to a bone marrow transplant (BMT).

If the disease is no longer active in her marrow, during the maintenance phase of treatment HLH patients are monitored closely for the ongoing functioning of their immune system. When confronted with an intruder (bacterial or viral), Isabelle's immune system will either (a) react normally with an appropriate immune system response that combats the threat or (b) react by launching a renewed attach on own blood components—platelets, red blood cells and white blood cells. This response would again take us down the BMT path—after a supplemental round of meds to once again put the active disease at bay. We really want response (a). Response (b) could happen very quickly (within a few weeks) or it might take longer to develop (it could take years), or never happen at all. We will obviously be waiting anxiously for her latest test results and watching her very closely as her meds are reduced.

As described above, unfortunately or fortunately, a BMT is the only option available if the HLH does not resolve itself. We know that: (1) HLH is fatal if left untreated, (2) because the disease is hard to diagnose and many patients are too sick when it is found or don’t respond to treatment, about half of the patients don't make it through the initial 8 week treatment (go Isabelle), (3) if there is no genetic component, this initial treatment with chemo and the other drugs can cause HLH to resolve itself, (4) if there is a genetic component, BMT is the only "curative" measure for treatment (the doctors keep using that word--curative--instead of "cure"), and (5) we will likely have no definitive answer to whether Isabelle has the genetic component (although they continue to test for the few know genetic markers) except for the persistence of the disease. It is likely, however, that she has some genetic predisposition because the disease is so rare and she got it so early in life that her system had some vulnerability to HLH.

In our meeting with the doctor, we also discussed the bone marrow transplant (BMT) process and the donor match results thus far. In a word, BMT sounds scary. There are a slew of problems, some potentially fatal, that could result from a BMT, not the least of which is the new marrow can attack the patient. Known as Graft Versus Host Disease, this is somewhat of a problem about 25% of the time, and a severe problem about 10% of the time. Infections during the transplant phase are another major risk, as is organ failure. In this regard, Isabelle is at some increased risk for liver issues because she has had some abnormal liver function previously, and there has been evidence of fluid in her kidneys although they are functioning normally. Isabelle’s level of the CMV virus, another matter complicating her condition, continues to drop and is less of a concern than it had been. But compared to most people who undergo the BMT procedure, she is in pretty good overall condition.

So, at this point, we enter the wait-and-see stage of Isabelle's treatment. We are hoping that her HLH is resolved and remains at bay so that there will be no need for a BMT. That is probably not the most likely scenario, however. If there is a need for a BMT, one piece of good news is that Isabelle's bone marrow is apparently very common among Asians so the doctors have been able to identify a number of potential bone marrow matches. The hospital has lined up one potential donor for Isabelle: a 27-year old Asian woman. They are also identifying a few back-ups in case she does not work out. Several possible donors were identified in a search of the Chinese registry, and a registry based in Taiwan has also been fruitful.

We continue to rely on all of your prayers and well-wishes and we thank you again for sending them our way. Here is a piece of wonderful news as we mark a milestone in Isabelle’s challenging young life: This Friday, August 18, 2006, is her first birthday. Our friends Tori and John, who were in our adoption group in China, are coming in from New York City with their new daughter Joss for the weekend to share the occasion with us. We will savor this birthday with Isabelle and hope for many more…

Warm Regards,

Isabelle, Anna, Kelsey and Craig

Craig sent this Update on Isabelle on August 1, 2006:

Hi Everyone,

We wanted to provide an update on Isabelle’s condition.

Before going over those details, however, a number of you have asked how you might sign up to be a bone marrow donor. We strongly encourage all of you to do so at your earliest convenience--it could literally save someone's life. The procedure is very simple. For instructions on how to join the National Bone Marrow Registry, go to:

http://www.marrow.org/HELP/join_the_registry.html

As for Isabelle, she seems more and more comfortable in her home environment, where she's been for almost two weeks. She successfully battled a low grade fever about a week ago, evidencing enough healthy white blood cells to fight it off. She is a voracious eater, helped in part by the appetite stimulating steroids she is taking (which have also puffed out her cheeks remarkably). She has gained more than a pound since coming home, and now weighs about 18 lbs, 12 oz. She continues to be very fussy and to have difficulty sleeping for any length of time, leaving everyone, but especially Kelsey, very worn out. Today, Kelsey came up with a new baby carrier configuration that put Isabelle on Kelsey's back, and that really helped to settle Isabelle down for some reason. Maybe she was carried that way in China...

In terms of her medical condition, the underlying HLH disease remains present. A bone marrow biopsy a couple of weeks back showed continued evidence of immune system agents gobbling up blood components, but at a much lower incidence than before. The doctors continue to monitor all of Isabelle's blood components and organ functions carefully. She gets her weekly dose of chemotherapy tomorrow. Isabelle has some evidence of fluid in her kidneys--cause currently unknown--and her platelet levels, red blood cell levels and other indicators fluctuate over time. Testing is still underway to try to find evidence of a genetic cause for her illness--if so, it's a one way ticket to the bone marrow transplant, assuming we find a donor. The doctors suspect that Isabelle is likely to need the transplant, but it is still too early to tell for sure. We may know more in about three to four weeks.

The good news is that the doctors at Strong recently completed Isabelle's bone marrow typing, and have informed us that Isabelle has a fairly "garden variety" bone marrow type with no weird, rare markers. Preliminary searches in the U.S. have identified several potential matches, but more screening and detailed testing will be needed to determine if one of these might work. An initial search of the Chinese registry revealed three potential donors at a low level of testing resolution, so there as well more work will be needed to see if any of them might pan out.

As previously indicated, Isabelle’s story was also highlighted in a recent news article in her home province of Jiangxi (visit http://www.jxnews.com.cn/jndsb/system/2006/07/19/002297900.shtml ), and we were told that people came forward after reading it who wanted to sign up for the Chinese registry. I have attached a translation (in MS word--see below) of the article courtesy of our good friend Kurt Burgeson in Virginia and his neighbor Elizabeth Xu (guess which one did the translation!).

We are also learning more about the bone marrow transplant process to be better positioned to make decisions in that arena if we need to. There are some scary short-term side effects such as rejection of the body by the new marrow (the opposite of what happens with other transplants) and organ failure, and potential long-term side effects such as sterility and developmental delays and greater risk of certain cancers. The healing process can take a year and well beyond--if all goes well. We also need to research and think about the best place for Isabelle to have a transplant if one is needed. Golisano Children's Hospital here is Rochester has a well regarded regional transplant center, but most HLH-related transplants appear to be done in Cincinnati, where the nation’s top HLH expert is located. We need to weigh a lot of pros and cons before making such decisions.

We continue to receive daily support from Kelsey's mother Sheila, who stays with us during the week, and other family members, and have a very caring and coordinated neighborhood support system that has provided frequent and timely meals and other support on a sustained basis. Anna is enjoying spending time with Isabelle between Anna’s various normal summer break activities, and she even helps Kelsey to administer Isabelle's meds. Isabelle always brightens up when Anna enters the scene.

We continue to add photos and other information to Isabelle's web site from time to time at:

http://isabelle.crbright.com Remember--no "www" in this address!

Below is a recent pic we call "Old Man and a Baby".

Please keep those prayers and well wishes coming, and remember to please sign up for the registry if you are so inspired!

Warm Regards,

Anna, Isabelle, Kelsey and Craig

Translation of Article in Southern Yangtze River City News on July 19, 2006:

American Couple Seeks Bone Marrow for their Daughter from Ying Tan

Chemotherapy

An American couple adopted a baby girl from Ying Tan orphanage to form a special family. However, just as the couple took the baby girl back to America, she was diagnosed a rare blood disease that might require bone marrow transplant. This American couple is extremely worried about their Chinese baby girl. They contacted our reporter, hoping to find the matching bone marrow for their baby girl.

Sudden Calamity: Baby Girl Diagnosed for rare blood disease

Isabelle is the baby girl adopted by the Brights on April, 5^th from Ying Tan orphanage. The Brights has a ten year old daughter. For health reason, they can not have another child. Therefore, they decided grow their family through adoption and to provide an opportunity for a happy life for the adopted child.

“The baby girl was healthy when they first adopted her. However, she started to have diarrhea soon after.” mentioned by Ms. Bright in an email. Isabelle has already developed bond with Ms. Bright even in a short period of time. She cries if she can not see Ms. Bright. On June 7^th, the Brights arrived at their home in NY with the new family member. However, Isabelle had diarrhea again on the next day.

After six days of diagnosis, the doctors informed the Brights that little Isabelle has HemophagocyticLympho histiocytosis (HLH). This is a rare blood disease with a probability of one out of one million people. Most of the children with HLH can not be cured. If the disease is hereditary, the only cure is bone marrow transplant. During the diagnostic process, the doctors found that Issabelle has Cy Tomegalovirus. Some people got affected with HLH through this virus.

Active Treatment: Making progress but still requires chemotherapy

“This weekend, Isabelle might come home; however, she still needs to do Chemotherapy every week.” On July 17^th, during our latest conversation with the Brights, they told us good news. Lisa is doing her first phase of Chemotherapy that will last eight weeks. This is Isabelle’s third week of the treatment. She is getting better and she will come home after her IV. However, she needs to return to the hospital to do Chemotherapy and checkup every week.

The Brights are very sad that the eleven month old Isabelle is going through so much pain. Kelsey stayed in the hospital caring for Isabelle every day. “In the beginning, Isabelle’s screaming broke our heart. Now, we can see her smile occasionally.” said the Brights. The disease almost destroyed Isabelle. Now Isabelle is getting calmer after the treatment.

However, the doctors told the Brights that they are not sure whether Lisa is cured. It is possible that the problem will reoccur. If the problem reoccurs, the only treatment left is bone marrow transplant. In the next four to six weeks, the doctors will develop a better long term treatment plan.

Urgent Need: Seek matching bone marrow to save little life

“Although matching bone marrow is not needed at this time, we still hope to find the matching bone marrow that can be used when needed.”

Doctors told the Brights that for some patients, the disease can be cured through medicine, however, for other patients; the effect of medicine is only temporary. The ultimate solution is still bone marrow transplant. The best match is the bone marrow from brothers or sisters. However, with new medical technology, matching bone marrow can be found through none blood related donor. Although Chemotherapy and bone marrow transplant have risks, these are last hope for some patients.

The Brights really hope to find the bone marrow donor in order to save Isabelle’s life when needed through Jiang Xi news agency since Lisa was adopted in Ying Tan. Currently, Lisa is testing her blood cell type. The Brights are contacting Chinese bone marrow database, hoping to find matching bone marrow.

Craig Sent This Mini Email Update on Isabelle on Thursday, July 20, 2006:

Isabelle Came Home Today! She is now fussing comfortably in her room instead of in the hospital. Craig

Craig Sent This Email Update on Isabelle on Wednesday, July 19, 2006:

As a result of our friend Jonathan's efforts, this article appeared yesterday in the Southern Yangtze River City News (Jiangnan Dushi Bao in Chinese, the most popular newspaper across Jiangxi), which is Isabelle's home province. According to Jonathan, many people have inquired about signing up for the bone marrow registry in China as a result. We'll work on getting a translation. Craig

http://www.jxnews.com.cn/jndsb/system/2006/07/19/002297900.shtml

Craig and Kelsey Sent This Email Update on Isabelle on Monday, July 17, 2006:

Hi Everyone,

Not a ton of new things to report on Isabelle's condition. She is making slow but notable progress on her drug treatment regimen, and is completing her fourth week of treatment this coming Wednesday. It's too early to tell how successful Isabelle's treatment will be in sending the underlying HLH into remission. If it persists, which would be an indicator that the underlying cause is familial or genetic, her only option for a cure is a bone marrow transplant. We should know more in that regard in about 4-6 weeks. For now, the doctors are trying to strike a balance between attacking the underlying cause of the HLH through the drug treatment, and carefully monitoring and adjusting the levels and timing of those meds to minimize the toxicity that they pose for her body.

With the central line that has been installed in Isabelle's chest for giving and taking fluids including blood, she is now free of those limiting and uncomfortable arm IVs and armboards. Kelsey did the weekly change of dressing for the central line on Sunday, and even the nurses were impressed with her proficiency at this delicate procedure. Kelsey has become quite a knowledgeable and skilled amateur nurse and doctor, and plays a very active, confident, and assertive role in Isabelle's daily care. She is also amazingly upbeat, selfless and resilient in dealing with the stress, uncertainty, and ups and downs of Isabelle's illness, and has done wonders to improve Isabelle's level of comfort and to contribute to Isabelle's substantial progress to date.

During the past week, Isabelle went from getting the VP-16 chemo treatments twice a week to once a week, and the doctors are slowly starting to wean her off the other meds over time to see how her immune and blood processing systems function without them. They have also switched most of her meds over to being adminstered orally rather than through IV's, which is an important prerequisite in preparing Isabelle to go home, which is still some days away at the earliest if she has no unexpected setbacks. Isabelle has had a couple of minor fevers in the last week to ten days that went away on their own after a few hours. She also needs to get her white blood cell count up so that she can have better infection fighting capabilities, and she still periodically needs blood transfusions due to drop-offs in her red blood cell and hematocrit counts.

Isabelle continues to be very fussy a lot of the time. We quizzed her doctors as to whether Isabelle's irritability could be the result of the disease affecting her central nervous system (CNS), since irritability can be a symptom of CNS involvement. But the attending doctor currently in charge of her care does not think so. Isabelle also has restless nights at times when she may only sleep a total of 4-5 hours. Kelsey, Anna and I stayed with her at the hospital on Saturday night and Isabelle had a good night and slept about 8 hours, which was good for everyone. At the same time, Isabelle is smiling more frequently, and is showing increasing signs of the upbeat, happy baby we adopted what now seems like about five years ago. She especially likes holding chopsticks in each hand and banging them on the chair or table--this gives her great life satisfaction. For pictures of this and other recent photos from Isabelle's hospital stay, visit her web site at

http://isabelle.crbright.com/latest_news.htm

I've also attached to this email a family photo taken at the hospital yesterday showing Isabelle, Anna, Kelsey, Kelsey's mother Sheila, and me.

There is also some positive news to report on the effort to publicize Isabelle's case in the Chinese media. Our friend Jonathan, who I met on the plane from Guanzhou to Beijing during our trek home, and whose family just happens to have lived in Isabelle's province for the last thousand years, has contacted several newspapers and a television station in the area of Jiangxi Province. All are interested in running stories about Isabelle's adoption and her battle with HLH. The articles will mention the benefits of locating Isabelle's birth mother (likely a long shot) since someone in her family might make a good bone marrow donor match if Isabelle needs a transplant, and will also highlight how people can sign up for the Chinese bone marrow registry program. The more people that sign up, the more likely that Isabelle with find a good match, and that others in need of transplants can benefit, too.

Jonathan has been very energetic and aggressive in managing this media effort, including obtaining lots of official documents and pictures from us describing Isabelle and her condition, and in establishing a relationship with key people in the Chinese bone marrow registry to find out more about how people can sign up. The doctors here in the US are working on identifying Isabelle's bone marrow type, and that information should be available sometime this week. The Chinese donor registry is eager to get that information and to search for a match. Through Jonathan's and other efforts, we are doing all we can to lay the groundwork now in case we need to go down the bone marrow transplant path later. A number of you have asked how you can sign up for the bone marrow registry as well. I will provide that information shortly, and we encourage everyone to do so to possibly help Isabelle or another family in need.

We also continue to be amazed by the ongoing and extensive outpouring of care and support for Isabelle and our family by friends, neighbors, and others since this ordeal began. Most recently, Kelsey's brother Garth, wife Sandy, and their family came from Massachussetts to help out, and Sandy even took up overnight hospital duty with Sheila! Our neighbors and other friends have kept us so well fed that I am gaining weight from the experience. All of this help and your many words and prayers of support have gotten us all through many days when our energy and spirits might have otherwise waned, and for that we are humbled and grateful. Please keep those prayers and good thoughts coming.

Kelsey wanted to also say a few words:

Hi--

The doctors initially told us that Isabelle would need to be in the hospital for at least 3 days for testing. Here we are 32 days past that initial estimate. I remember thinking, "three days living in the hospital! No way!" Boy, how our perspective has changed.

As if it's not enough that Isabelle is (a) fighting for control of her red blood cells, (b) enduring painful treatments such as chemotherapy, and (c) living in a foreign hospital . . . she's now determined to get every single one of her baby teeth in the span of 2 weeks. When we met her, Isabelle had one tooth . . . when we arrived in the US, Isabelle had 2 teeth . . . she now has 6 and is working on another! Ouch, she's in agony. In addition to the teeth, the chemo causes painful mouth sores. I'm surprised she's able to eat anything at all with all that's happening in there. And, btw, she's eating like a champ. One of our favorite nurses, Leslie, mentioned that the steroids Isabelle is on will increase her appetite. This is no lie. She is hungry all the time. Also, she eats pretty much anything (except fruit--that must hurt too much) as long as we serve it to her on chop sticks. After living with Anna, a child who seemingly subsists on air, I'm fascinated at how much a baby can eat and drink.

Speaking of Anna, she's doing great. She spent Saturday night at the hospital with us and helped with Isabelle whenever possible. Craig and I are amazed at how grown up she is and how well she's been handling the situation. Go Anna!!

Love, Isabelle, Anna, Kelsey and Craig

Craig and Kelsey sent this email Update on Isabelle on Thursday, July 6, 2006:

Overall, mainly just good news to report on Isabelle. She has just completed her second week on the three drug treatment of dexamethazone, cyclosporin, and chemotherapy. This regimen has definitely produced dramatic and favorable results. Her chronic fever went away, her stomach returned to its normal size, the bright red dots on her stomach, back and elsewhere cleared up, her platelet counts are on the upswing, and she is maintaining her red blood cell counts better and going longer between tranfusions. Her liver function has also improved, and the jaundice in her eyes has diminished noticeably. Her digestive system is again functioning normally, and she is making solid stools with no further traces of blood.

About a week ago, we got a green light from the doctors to begin feeding Isabelle again. She started out eating rice cereal and anything else in sight, but would not drink formula, especially the US offerings. Then we tried her on Chinese formula, Nestle's Nestogen 2 to be precise, but that also didn't do the trick. Then Anna got the idea to have us add rice cereal to the formula since Isabelle liked the cereal, and that got Isabelle started on drinking it. Then she lost interest in solid food and just became a formula baby. This continued until two days ago, when she started nibbling little cereal stars with almost no nutritional value. Then yesterday, Kelsey's Mom, Sheila, suggested dipping the stars in other baby food, and Isabelle took a liking to this method. Now, as long as Kelsey uses the stars for dipping, and feeds Isabelle with either her fingers or chopsticks, Isabelle will eat what she is offered. She is also still taking formula, and we are weaning her over to a domestic brand as our Chinese supply dwindles.

Despite all these positive developments, Isabelle's days have not been completely rosy. Around Monday, Isabelle started to run a low grade fever, and she tested positive for a sepsis in her blood. This is apparently common in kids who have had their immune systems suppressed, and she has been receiving antibiotics to combat this and has responded well. The drugs have also made Isabelle very cranky and fussy quite a bit of the time, and her sleep patterns have been inconsistent. Morphine, Benadryl and other drugs did not seem to help, but Adavant, an anti-anxiety medicine, has recently contributed to helping Isabelle to sleep for stretches of several hours or more during the night. Following an impressive 48 hour screaming jag at the beginning of the week, Isabelle's voice basically deserted her. While her little cat-like hisses are kind of pathetic to listen to, it sure beats the ear piercing SCREAMING that nearly drove us crazy. The laryngitis came just before our sanity left us -- our wonderful Lord works in mysterious ways.

And then, today, at long last . . . a smile!! For the last several weeks, Isabelle had IVs in both of her arms/hands so her general dexterity was limited to just the tips of her fingers. Yesterday, one of her IVs stopped working and the nurses had to remove it. This gave Isabelle a free hand and arm. Today, she was very interested in picking things up and reaching for objects. She doesn't play with toys so much as everyday objects like paper plates and spoons (possible insight into her past?). Kelsey was searching the room for fun, everyday objects you might find in the hospital to play with and spied some cotton balls. Isabelle picked up one in each hand and started to clap them together and then presto! A smile. She repeated the feat a few more times that day. On the occasion of one of the smiles, Anna was there and she said, "That's not her smile smile, it's just a smile." Anna is referring to the fact that Isabelle's true big smile has a cheek-scrunching, nose-wrinkling quality to it. Trust us, we're happy to see anything other than the boo-boo face she has had on for almost a month.

We didn't capture the smile on camera, but have attached a picture of Isabelle on the mend and eating.

Tomorrow, if all goes well, Isabelle is going to have more surgery, again under general anesthesia, to put a central line into her chest. Sounds awful, but it will hopefully provide a better way to draw blood and give her IV medicines. Barring further infection, this should stay in place for many weeks and she will be discharged with it in place. Yes, I said discharged. The doctors aren't sure when it will happen, but it should happen within the next few weeks. She will continue with her treatments by taking most of the medicines orally and then traveling in to the hospital as an outpatient once a week for her chemo and periodic bloodwork.

In sum, we are 2 weeks downstream on the first part of Isabelle's treatment for HLH. The first part lasts for 8 weeks. At the end of week 8, the doctors will perform another bone marrow biopsy to figure out how well the treatment worked. Also, they will be gradually weaning her from the drugs to see if her system is able to have a normal immune response (for example, this week her chemo goes from twice a week to once a week). If not, then a bone marrow transplant looms as the likely best hope for her to be cured, assuming we can find a suitable donor. We are still trying to interface with contacts in China to publicize Isabelle's case there, to potentially find Isabelle's birth family, and to try to help increase the Chinese bone marrow donor registry, particularly in Isabelle's home province of Jiangxi where it might be more likely we will find a bone marrow donor match. Please, please continue to pray for her!

As for the rest of the family, we are all hanging in there but getting hospital weary and feeling the cumulative effects of ongoing sleep deprivation. Kelsey continues to bear the brunt of the care responsibilities for Isabelle, and is at the hospital most days and nights. Craig stays over quite a bit of the time and solos every few days to give Kelsey a break. Sheila mans the household and takes care of Anna when we are not home, and also frequently visits the hospital during the day and provides solo or wing man support some nights to give Kelsey and Craig needed relief. Sheila is watching Isabelle tonight, and Kelsey, Craig and Anna are enjoying a rare night where all three are home at the same time. Anna continues to be a trooper, and has grown up immensely before our eyes during this traumatic family challenge. Finally, the ongoing and sustained efforts of our neighbors, friends, and other family, including meals, donations, phone calls, visits, and more, have made a huge contribution to keeping us going day after day, and we are immeasurably grateful for all of this help.

We are also happy to report that we are almost finished setting up a Home Page describing Isabelle's adoption and her battle with HLH. This will include lots of pictures of her smiling, details from our China trip, and other highlights from Isabelle's very adventurous first ten months. It will also provide a record of all the health updates that we have sent out, since many of you may not have received all of them. We will give you the page location as soon as it is up and running in the next couple of days.

Isabelle, Anna, Kelsey and Craig

I'm at home for a mandatory night's rest tonight and it does feel good to be here. Craig is solo at the hospital tonight--please send a prayer his way because he's as tired as me. He's been coming to the hospital after work almost everyday for dinner and a sleep over. This is an exhausting schedule, but greatly appreciated by me.

Isabelle has been quite fussy lately and a break is a good thing. In regard to her fussiness, they believe that (a) she is reacting to the steroids with anxiety and anger (the nurses call this "roid rage") or (b) the condition has infiltrated her central nervous system and is wreaking havoc with her brain. We are hoping for "a" even though it means weeks of fussiness. "B" would mean chemotherapy directly into her spinal cord. OUCH!

Isabelle's fussiness is not your garden variety fussiness. No, our little one-in-a-million is basically wailing day and night. She cries nonstop then passes out for either 10 seconds or a few minutes and wakes up to do it all over again; crying 'round the clock. It would be quite an impressive feat if it weren't wrecking my sanity.

They are now allowing us to feed her. After 2 weeks of nothing but Tylenol, she's really excited about her rice cereal. This does quiet her down for a few minutes every few hours. Unfortunately, after 2 weeks without eating she's basically lost interest in taking a bottle (or forgotten how to use a bottle). This is a bit of a problem because she doesn't know how to use a cup yet. She's OK as long as she's in the hospital because they can give her IV fluids, but this will need to be corrected before she comes home.

Isabelle's fussiness and the impact it's having on her parents have been a constant source of discussion on the ward. There have been a slew of "experts" coming in to give us advice on how to distract her and/or get her to take a bottle. Today, this influx of visitors freaked Isabelle out and she had a major meltdown. Thankfully, there was a container of "Milano's" nearby. I called to my mom, "quick, gimme a cookie" and I shoved small pieces in Isabelle's crying mouth. It was a major 911 chocolate emergency and, I'm happy to report, that the Milano's did the trick. They also turned her on to cookies in a major way and she ended up eating a few more by the end of the day.

I want to say a public thanks to my mom for all of her support. She's been amazing and she's everything I'd like to be for my daughters someday, God willing. I sometimes forget that my parents, while worried about Isabelle, are tormented by what they see their little girl going through. Big hugs and thanks to both of you.

We've received a lot of calls and emails from all of you, wondering how we're doing. Well, the short version is, this sucks. The long version is:

My arms ache. I've been holding her now for almost 3 weeks straight. She favors my left shoulder, so that side has borne the brunt of her wonderful weight. She's absolutely the most cuddly, warm, perfect bundle for my shoulder. A weight I gladly carried back from China and a weight I would gladly carry to the moon. My arms ache not holding her right now.

My eyes ache. I've been awake much of the time. I help out with most of her routine care--changing diapers, comforting her, feeding her, giving her oxygen when she needs it--you know the usual baby things. We catch some rest in between nurse visits. Some nights are more restless than others. My eyes ache. I've been crying off-and-on for days. Each day that passes brings its own uncertainty about her future. Each day brings new pain and horrors for her. The tears are for her, us, her big sister, our family and friends; but mostly for her. This little mite, ripped from the only family she ever knew and set down in a foreign land. I cry for her pain and confusion. I cry because I can't help her. I can't make it better, even with the thousand kisses I've brushed against her head.

My eyes ache looking at her beauty. She is amazingly perfect--the Asian Gerber Baby. My eyes ache to see her smile again. Her last smile was the day we arrived at the hospital. She smiled at her big sister. My eyes ache to see her nose-wrinkling smile again. My eyes ache at seeing what's happened to her--bruises, punctures, tape, IVs. There are sometimes so many things going into and out of her it's hard to hold her, but I always manage.

My back aches from bouncing her slightly back-and-forth in the soothing "mommy dance" all the while singing "you are my sunshine" into her hair. My back aches with the weight and responsibility that is parenthood. The responsibility to protect her and care for her--so limited now. My back aches with the desire to carry all of her burdens.

My nose aches with the smell of hospital stays--disinfectants, blankets, medical supplies. My nose aches with the effort to inhale her beautiful scent; so uniquely her.

My neck aches from looking up at her monitor--pulse, respiration, blood/oxygen levels. It's over her bed, slightly to the left. I look at her numbers a zillion times a day to see how she's doing. My neck aches with joy when she cuddles on my left shoulder, rubs her face on my neck, and sniffs me.

My ears ache from the beeping equipment and loud noises at the hospital. My ears ache from hearing her scream. My ears ache from missing the sounds of her baby language. Every now-and-then, in between whimpers and screams, she pops out a "ma ma ma." Her small voice is impossibly cute and usually totally unexpected. My ears ache with longing to hear her laughter.

My lips ache from telling her lies--each time they poke her, I hold her and murmur, "it's OK, honey, it's OK." It is totally NOT OK. This situation and what she's going through are the opposite of OK. My lips ache from asking questions to which there are no certain answers. My lips ache with dry skin from biting them to stem the tears. My lips ache from kissing her forehead a thousand times a day. My lips ache for the chance to do that every day of my life.

Most of all, my heart aches with love for her. It squeezes shut when I think about her and her struggle. My heart aches to soothe her. My heart aches for the pain she feels now and for the pain that is yet to come. My heart aches for her big sister, denied these days with her. My heart aches to play with her. My heart aches to share her with her family and friends. My heart aches for her to be well. My heart just aches.

Thanks so much to all of you for your continued thoughts and prayers. It is a huge benefit to all of us, and we believe it's making a big difference. We enjoy receiving your messages. I print them out and take them to the hospital so Kelsey can read them, too.

Isabelle's health situation has some parallels to Anna's premie experience almost ten years ago -- a roller coaster from one day to the next.

In general the doctors appear pleased with Isabelle's initial treatment response since the diagnosis of her HLH. Her fever appears to be gone for good, apparently whacked by the steriods right off the bat. Her red blood cell count is better. Her main liver enzymes have also improved. Her oxygen saturation levels have also normalized. The red rash on her stomach and back has not yet begun to resolve but does not appear to be worse.

At the same time, Isabelle has been quite fussy and tends to sleep quite a bit since starting all the new meds. Isabelle's first round of chemo last Wednesday was pretty tough on her, especially toward the end. They took blood right afterward to test her various chemical levels, which probably made things worse, and Isabelle's heart rate shot up to over 200 BPM. They gave her a transfusion which helped settle things down, and the next day Isabelle pretty much just slept.

On Friday, she seemed very distraught, and cried or whimpered off and on for much of the day. The Cyclosporin given to suppress her immune system seems to especially make her agitated--she gets that twice a day. The doctors gave her some morphine to help Isabelle to settle down (never anything for the parents, alas).

Isabelle also still has low platelet counts so she's not clotting as well as they would like--apparently the spleen, which is still swollen and is still leaving her belly very swollen, is catching all the bad blood components coming out of her bone marrow and clogging things up including trapping her platelets. They gave here new platelets both Friday and Saturday.

On Friday evening, Isabelle's pediatrician stopped by with a wonderful gift -- a brand new exersaucer for Isabelle's exclusive use. This is important because in light of Isabelle's immune suppressant meds, we have to be extra careful about cleaning toys and things used by other kids in the hospital. Kelsey finally came home Friday night and got a good night's sleep, which really helped her to recharge from a couple of near sleepless nights. I got to solo at the hospital. During the night Isabelle had some evidence of some more blood in her stool, which appears to be from low platelet counts affecting her clotting moreso than from the initial infection. Isabelle cried if I picked her up, but went right to Kelsey without a peep when she showed up in the morning.

Moving toward the weekend, Isabelle's heart rate dropped down and she experienced rates of as low as 45 beats per minute, which are really low for a kid her age. The doctors were not overly concerned about this and advised us not to become "monitor watchers".

There are a lot of other things percolating that seem to pop up by the day, and which may or may not be consequential.... On Saturday they found that Isabelle has a Cytomegalovirus (CMV) -- something like herpes that a lot of people have with no ill effects. She had DNA in her system for the virus but not antibodies, which is unusual except in kids with compromised immune systems or who have just contracted the virus. This virus can also cause some of the symptoms she is showing, such as the enlarged spleen, but it's probably just a sidelight -- they're treating with an antiviral drug to keep it in check. One theory is that this virus may have helped set off her main illness, perhaps in combination with a familial component.

Also on Saturday, they decided to hold off on Isabelle's chemo because her bilirubin counts were high--a measure of how well the liver moves bile out of your system--and which is making her eyes look a bit yellow. Since the bile removal process is a key way that chemo moves out of your system, slow bile movement means the chemo from Wednesday (she is scheduled for it Wed and Sat) may not have dissipated enough, so they are consulting with experts to see if giving her the next dose will put too much total chemo in her system. Next dose still might happen Sunday or maybe Monday.

Late in the day on Saturday the doctors also said that Isabelle's potassium level was high, so they did an EKG -- high potassium can mess up your heart. That came back o.k. and they gave her calcium to help keep the potassium in check. I came home Saturday night and worked to rescue the yard. An anonymous good samaritan had cut the grass at some point during the week.

Although Isabelle is very tired from the drugs and her overall ordeal, we try to get her into the exersaucer, to read to her, and to do other things to keep her spirits up along with her strength. The Madeline book -- the one where Madeline has her appendix out -- seems to calm Isabelle down for some reason. Isabelle picks up on things pretty quickly. She seems to be able to tell a doctor or nurse from a regular human by their appearance, and immediately starts crying when a doctor or nurse walks in the room -- typically to do some procedure or to otherwise examine her.

On Saturday we also moved Isabelle over to the hematology ward where they do a lot of chemo and stuff, so the doctors and nurses there know better what to expect in managing her treatment regimen. The room is a little bigger too. I took in some framed pics of Isabelle from back when she was still smiling so everyone can see what we're shooting for.

Anna is all excited because Kelsey is allowing her to get her hair cut and donate it to kids with cancer. That's scheduled for today, so I hope that does not get trumped by chemo.

Anna has grumbled a bit lately about us giving so much attention to Isabelle. We have a great family, friend, and neighborhood support system here, but at this point in Isabelle's illness it's almost impossible to strike a reasonable balance across home, work, and hospital. Our neighbors have been great in bringing meals and providing other support, including sending a massive gift basket to the hospital filled with goodies. Kelsey's mother Sheila has basically assumed responsibility for Anna's daily care, with help from a host of others.

We will try to send these periodic updates as time permits. Please keep those prayers and good thoughts coming!

Love, Craig (and Kelsey and Anna and Isabelle)

You may not have all received Kelsey's previous below message, but I'm sending it along with some updated information on Isabelle's health condition. She has remained at Strong Children's Hospital since Monday evening, and Kelsey is staying there with her in a private room, and I've been there most nights as well. Kelsey's Mom Sheila has been a big help staying at our house with Anna to keep her routine fairly normal and providing a lot of other assistance. Anna is doing well also.

We spent the first 24 hours in the emergency room beginning Monday evening, and then got to a private room on Tuesday evening.

Here's a review of what happened during the week:

--Isabelle arrived at the hospital with bloody diarrhea and a high fever, as well as a rash that is commonly associated with protein issues. They gave her an IV and stopped feeding her any solid foods, and started running every test under the sun. The one medicine they did choose to administer is Flagel, which is an oral antibiotic for parasites. The doctors initially took a very conservative stand on adding other antibiotics except for some on day one when they were concerned about possible meningitis (turned out negative), which was then discontinued. They have been giving Isabelle Tylenol for her fever.

--Isabelle

was pretty stable but cranky and unsmiling, with her condition unchanged through Thursday night, although around mid-week they started to notice some swelling in her liver and spleen and some evidence of platelet issues in her blood tests. The one improvement she showed is that the blood in her stool subsided, but the loose stools and fever remained. Thursday overnight her abdomen started to look swollen (belly button became an "outy"), and her rash got worse, and her bloodwork showed declining red blood cell and platelet counts.

--Until Isabelle's Thursday night setback, the doctors were comfortable continuing to look for a cause of her problems. All of her tests for bacteria and parasites, and every other disease they can think to test for, have come back negative since we arrived in the US, to go with the negative tests she had when we were in China. As this has gone on, the specialists (which now includes the gastroenterologists, infectious disease people, and hematology among others) have broadened the scope of their search to begin investigating the possibility of non-infectious diseases including liver disease, cancer, you name it.

--We have been engaged in an effort to obtain information from experts on health problems commonly found in kids adopted from China, in order to try to make sure she does not have something that the doctors here just are not used to seeing. We received quite a few suggestions from our adoption contacts and from a doctor in NYC know as the "Orphan Doctor", that we passed along to the medical team. Our pediatrician has also consulted with the Orphan Doctor via phone and email.

--The Orphan Doctor had a very different view of how to approach Isabelle's condition. She has said that because antibiotics are often given for colds and other minor health issues over the counter in China, many of the strains of bacteria and other organisms that kids commonly get often don't show up under standard culture tests. As a result, she strongly advised treating Isabelle with a full range of antibiotics including Cipro from the start. Through Thursday night's decline and even after, the specialists were content to wait out the investigation process and continued to hesitate on antibiotics, saying there was no clear diagnosis so antibiotics would likely not help and could hurt Isabelle.

--On Friday, in consultation with our pediatrician, who is also an attending physician at Strong Memorial and therefore is in charge of her overall care there, we pushed successfully for the doctors to move off of their "wait and see" approach. We made two basic arguments: she is sicker than when she got here, and they should treat her aggressively now including adding antibiotics because if they wait until she is even more sick to get more aggressive, Isabelle may have too large a hill to climb to recover. We also expressed frustration because Isabelle had not been started on nutrition as of Friday a.m. despite the fact that the doctors talked about doing so as early as Tuesday and Wednesday. This somehow fell through the cracks, and we believe contributed to the worsening of some of Isabelle's various symptoms.

--By the end of the day on Friday, there had been a dramatic change in the efforts on Isabelle's behalf. Her pediatrician agreed to insist on adding a broad spectrum antibiotic. The infectious disease people still don't agree with this approach, and said that if she happens to improve after this is administered it won't prove the antibiotics worked. We indicated that we really didn't care as long as she gets better...

--Recent efforts include that fact that on Friday morning, they put in a pic line to make it easier to give Isabelle meds and nutrition and to draw blood. She is very hard to tap for blood with typical methods, and they need more and more because the list of things the doctors want to test for keeps growing. Since Friday a.m. the doctors have also given Isabelle Vitamin K to help her liver, have taken two x-rays of her abdomen and a CT scan on her chest and abdomen, gave her blood to help address her anemia, began giving her a fat and other nutrition IV package, and began the broad spectrum antibiotic. Isabelle remains in about the same condition from yesterday, but has not gotten any worse. We are told that she is not in immediate danger, but she is very sick and the future course of her condition remains unclear at this point in time, and we anticipate a lengthy hospital stay under any circumstances. The Orphan Doctor continues to advise our pediatrician, and we think we are o.k. here for now with the current regimen and the availability of this outside input on China health issues facing adoptees.

Your thoughts and prayers would be appreciated as we work through this challenge, which as you might imagine has been a little more than we bargained for with the adoption experience. Certainly Kelsey and I have benefited from our prior experience dealing with major health issues as a result of Anna's premature birth almost ten years ago. Kelsey has done an amazing, committed, upbeat, unwavering job of being there for Isabelle and of actively participating in her daily medical and non-medical care despite sleep deprivation and a highly stressful environment. We also appreciate the efforts of all the friends, neighbors, family, and others who have generously provided moral and logistical support in helping us to manage this effort. But apparently there is no such thing as an easy arrival for a child in the Bright household, no matter the delivery method...

Love,

Craig and Kelsey and Anna and Isabelle

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In a message dated 6/12/2006 5:38:34 PM Eastern Standard Time, Kelsbright writes:

Hi All--

Well, the news on Isabelle's health problems continues to mystify doctors in the Rochester region. We have been to the doctor 3 times and the ER once (last Friday night) since returning. Tonight, we are off to the ER again with the understanding that Isabelle will be admitted to the hospital when a bed becomes available.

The doctor wants her to be looked at by the infectious diseases team and the GI group. We are less-than-happy about the hospitalization-just-for-tests route but hope to find some answers.

More in a few days . . .

Kelsey

Here are our initial findings from talking with orphanage and medical folks:

1. Child did not breast feed at foster family.

2. Foster family had 2 other foster kids that have not had a health trouble.

3. Infectious desease are common in this area of China.

4. The foster family's water supply was from the public supply, not a well or local.

1. Check for giardia. Must treat with Flagyl. US doctors don't like this, but it is the only thing that really kills this bug.

2. Check for Malaria

3. Check for Thyphoid

4. Check for all strains for Hepatitus: Strains A & B are common. Stains C, D & E are also common in China. Sometimes a child can be vacinated for Hep, but the vacination does not "stick" and the child must be vacinated again.

Note: 30% of Chinese nationals test positive for a strain of Hepatitus - very common to be a carrier.

5. Check for sheigela - a water born parasite.

6. Determine for certain that the she is not reacting to any form of lactose (you've probably done this one already)

7. Check again for HIV (very rare that this could cause such symtoms)

8. The Chinese in general have a very high resistance to antibiotics so what your local USA doctor may be familiar with perscribing antibiotics will not kill the bact. OTC anti biotics are so common and misused here in China that bugs can easily mutate and form resistance.

9. Check for Schistosmiasis - common in this part of the country

1. Check out www.pkids.org email: trish@pkids.org Trish Parnell of this organization has been a member of one of our egroups - we do not know her personally. Tel: 1-877-55-pkids This is a resource of information for parents who have kids with infectious disease

Dr. Hotez is from Yale and specializes in infectious disease and health concerns from this region of China. He has a zillion local health professional contacts in the region. Sorry, I do not have personal contact information.

I am faxing to Cyndi Peck CDC research findings on health concerns from this area that you may wish to forward to your doctors. It is in PDF format and too large for me to attach. I have highlights some sections.

Craig, please let us know if there is any more info or assistance we can provide. You are welcome to call me on my mobile. Please keep us updated as time and opportunity allow.

You may be aware that our new daughter Isabelle was having some bloody diarrhea and fever before we left China. Her condition has continued to worsen, and she has been hospitalized here in Rochester, New York since Monday. Her body is showing significant strain from the ongoing battle against whatever infection she might be fighting, including some swelling in her pancreas and liver. Repeated tests for bacteria and parasites have come back negative, and Isabelle appears to be growing weaker and weaker, so as you can imagine the doctors are puzzled and everyone is increasingly concerned about her prognosis.

Since there me be things commonly found in China in terms of this type of illness that our doctors may just not be attuned to, if there is any way that you might be able to put any medical experts in gastroenterology, infectious diseases, or blood from a leading western style hospital in Beijing or elsewhere in touch with our doctors here that would be greatly appreciated.

Sorry for the scary tone of this message, but we want to be able to do everything possible to maximize Isabelle's chances of recovery.

Someone could call my cell phone in the US as a way to get in touch with us, and if I don't pick up least leave a message with the contact information of someone we might call back. If you leave an email response I will try to check that at well.

They can also try to reach Isabelle's pediatrician, Dr. Dovichi.

Thanks in advance for any help you might be able to provide. It would also be helpful to know if any other kids at the orphanage or foster care in the area where Isabelle was living are having similar issues.

Well, the news on Isabelle's health problems continues to mystify doctors in the Rochester region. We have been to the doctor 3 times and the ER once (last Friday night) since returning. Tonight, we are off to the ER again with the understanding that Isabelle will be admitted to the hospital when a bed becomes available.

The doctor wants her to be looked at by the infectious diseases team and the GI group. We are less-than-happy about the hospitalization-just-for-tests route but hope to find some answers.