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Erin

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4/29/2002

Erin underwent the first of five daily clofarex treatments today. Today's treatment went much better than the first clofarex treatment went last time around. Although Erin is tired, she has not encountered any fever problems and is alert and in good spirits. Erin underwent a platelet transfusion and a red blood cell tranfusion today and will undergo another red blood cell transfusion tomorrow. If the remaining four clofarex treatments go as well as today's treatment, Erin might even get to return to Kansas City this weekend.


4/28/2002

Erin and Christy spent a quiet weekend in Houston. Erin's counts have started to come back and she is starting to feel much better. In addition, her spirits are picking up and she is returning to her old self. On Sunday, Erin and Christy drove around and explored the sights of Houston and then went out to dinner at (where else) Houston's.

The Mid-America Chapter of the Leukemia and Lymphoma Society held their annual ball this weekend—a fundraiser with which we have been very active over the last several years. This year, Rachel recruited some of her friends to work at the Ball as volunteers in the "Jewel in the Box" auction. Bret was not planning to attend this year, but Janna LaCock (the executive director of the Mid-America chapter) started twisting his arm late Saturday afternoon. Bret finally relented and recruited Emily as his date. Bret and Emily attended the Ball as guests of Paul and Nancy Clendening, who lost their son Brandon to leukemia several years ago at age 16.

Every one had a good time at the Ball. Emily helped Rachel with the Jewel in the Box auction and, in an effort to drum up money, Rachel sang for one of the tables in return for a higher bid. Perhaps the funniest moment was when some of Rachel's friends excitedly approached Bret to tell him that they saw Kit Bond (the Republican Senator from Missouri) at a nearby table. Bret had to correct them by pointing out that it was Dennis Moore (the Democratic Congressman from Kansas who Bret used to work with at the Smith, Gill law firm). Bret got a kick out of telling Dennis that he had been confused with, of all things, a Republican Senator from Missouri!

We would like to congratulate Sally and Norman Beal for putting together such a successful ball and to thank them for the kind and touching tribute they made in honor of Erin. We appreciate all the support we are receiving from our friends at the Leukemia and Lymphoma Society.

Tomorrow will be a big day, as Erin begins her next round of clofarex treatment. We will also begin the process of preparing for Erin's second transplant.


4/26/2002

Dr. Jeha was extremely pleased with the results of Erin's bone marrow biopsy today. Erin has no leukemia blasts in her peripheral blood and only two percent blasts in her marrow. Normally, anything under five percent blasts is considered complete remission. The doctors stopped short of declaring complete remission, however, because Erin's marrow has not yet at this time regenerated enough total cells to indicate by definition, based on a percentage of an adequate total cell sample size, complete remission. Yet, the results are encouraging enough that the doctors have instructed us to begin preparing for transplant. We will begin that process first thing Monday morning with phone calls to insurance companies and transplant doctors. In the meantime, Erin will begin her next round of clofarex treatment on Monday.


4/25/2002

Today was an uneventful day from a clinical standpoint. Erin and Christy generally spent the day at home other than a brief shopping errand and to stop by and say hello to AutoNation.com, the auto dealership that loaned us a vehicle. Erin's bone marrow biopsy is still on for tomorrow. The doctors have reminded us that it would not be uncommon to find leukemia cells in Erin's marrow tomorrow and that it often takes two rounds of clofarex treatment to get back into remission.

Our laptop computer currently is out of commission because of a virus. Thus, Christy and Erin do not have the ability to access e-mails for the time being. Until we get the computer fixed, Bret will access e-mails for Erin and Christy and read the e-mails to them over the phone.


4/24/2002

Erin's clinic visit today was long but relatively uneventful. Erin required another platelet transfusion today and her white blood cell count is still virtually zero.

The doctors have again moved her bone marrow biopsy to Friday instead of next Monday. The doctors wanted to ensure that the results would be back in time to decide whether to go forward with the next round of Clofarex on Monday. We learned today that there is a slight chance that they may decide to hold off on the next clofarex treatment for another week based on Friday's marrow results.


4/23/2002

Today Erin received a well-deserved break from clinical activity. Erin slept in and lounged around the apartment for most of the day. Overall, Erin feels reasonably well. She sporadically runs low grade fevers and is fatigued due to her low blood counts. The bright red rash from last week has subsided but is now causing Erin's skin to peel. Erin spends most of the day obsessed with peeling off her dead skin.

Dr. Jeha called today to check on Erin and inform us that the bone marrow biopsy will be Monday the 29th rather than this Friday. She still expects to start Erin on her second round of Clofarex treatments following the biopsy on Monday.


4/22/2002

Today was a very long clinic day. The clinic today was very crowded so consequently the lab was running late in getting results back. After two nurses noticed Erin trying to sleep on Christy's lap, Erin was moved to a private room with a bed. Erin's lab results revealed that she needed a platelet transfusion but other than that everything was fine. Some of Erin's electrolytes had begun to run low last week due to the drugs used to remove the excess fluid from her body. It now appears that the electrolytes have now stabilized within normal ranges.

Erin does not need to return to clinic until Wednesday. Dr. Jeha is planning another bone marrow biopsy for Friday. Erin will begin her second round of Clofarex treatments next Monday.


4/21/2002

Today started out with a rebellion but ended peacefully. At about 10:30 Saturday evening, we noticed that Erin's face look flushed and that she felt warm to the touch. When Erin finally relented and let us take her temperature, the thermometer read 100.9 degrees. Upon discharge from the hospital only 8 hours earlier we had been instructed to call the hospital for any fever over 100.5 degrees. We arrived back at the hospital around midnight with a very upset young lady. Fortunately when the nurse at the hospital took Erin's temperature we found that her fever had begun to decline on its own without Tylenol. The doctors decided to watch Erin for awhile and go ahead and run the lab work that we were scheduled to have done Sunday morning. At about 3:00 AM the doctors told us to go on home. Erin was all smiles with this news.

After getting some rest, Erin and Christy spent the day with Erin's cousin Jeff and his wife Tiffany. They drove to Galveston and peered at the Gulf of Mexico for a few minutes. This weekend, Galveston was host to a beach party and the streets were littered with trash. None of us left with a very favorable impression.

Erin spent the remainder of the day on the couch that she had been longing for during her three week hospital stay. Erin even ate dinner on the couch as Christy didn't have the heart to ask her to come sit at the table. Monday morning Erin will go to clinic for blood tests and an exam with Dr. Jeha.


4/20/2002

Erin was released from the hospital today. Needless to say, she is very glad to get back to the apartment. We celebrated by eating take-out at the apartment with Jeff and Tiffany Andra, Erin's cousins who came down from Oklahoma City to see her. At Erin's request, we watched Butch Cassidy and the Sundance Kid tonight. She requested to see this movie because she plans to go this summer to the Hole in the Wall Gang Camp, which was started with help from Paul Newman.

Erin will go back to the hospital tomorrow for blood tests. She will continue these daily blood tests until her white blood cell counts recover and her other blood counts stabilize. Now that Erin has stabilized enough to return to the apartment, Bret will return home tomorrow to Kansas City.


4/19/2002

The results of Erin's bone marrow biopsy today reveal that the first round of treatment was effective in eliminating all existing leukemia blasts. This result is encouraging, but it does not mean that Erin is back in remission. Not until Erin's white blood cell count begins to rebound (it is still essentially zero) and another bone marrow biopsy is performed, will we be able to determine remission. The outstanding question still to be answered is what type of cells will regenerate when her bone marrow once again begins to produce mature blood cells. At this time, we do not know when the next biopsy will be nor when she will begin her second round of treatments.

Erin was quite disappointed when learning that she would not be released from the hospital today. Every health care professional that walked into her room was subjected to her wrath about not being released today. At this time, the doctors plan to release Erin tomorrow. Everyone who is seeing Erin for the first time since Tuesday is commenting on how good she looks. She has come a long way since being readmitted to the ICU on Tuesday of this week.


4/18/2002

Erin continues to do well today. She was discharged out of the ICU and is now back on the floor. She is in a different room than before, with a view of the Astrodome and Houston's new football stadium. Her new phone number at the hospital is 713-745-8565. We doubt, however, that there will be much of an opportunity to receive phone calls because we expect that she will be discharged from the hospital tomorrow.

Erin's bone marrow biopsy is scheduled for tomorrow morning at 9:30. We should get the biopsy results late tomorrow afternoon.


4/17/2002

Erin is doing much better today, as her swelling and skin rashes have decreased dramatically. In addition, her blood pressure has remained stable, and she has not had a fever now for over 48 hours. She is doing so well that she has been pressuring the doctors to let her out of the hospital (and not just the ICU). We expect that Erin will be released from the ICU tomorrow and we hope that she may be able to get out of the hospital on Friday or Saturday. We do not know when she will have her next bone marrow biopsy. We assume that the biopsy will be on Friday.


4/16/2002

Erin has shown improvement today. She has not had a fever since yesterday afternoon, her rash has begun to recede a little and her blood pressure has remained stable. The doctors were not, however, seeing enough progress with her swelling. Thus, they transferred Erin to ICU this afternoon so that they could pursue a more aggressive course for reducing her excess body fluid. We have already seen a drastic improvement since Erin was transferred to the ICU—we can once again see her pretty blue eyes. We expect Erin to remain in the ICU for 24 to 48 hours before returning to the general hospital floor.

Erin seems to be regaining some of her fighting spirit. We actually were pleased to see some of her fiestiness today, as she staged a small rebellion against the doctors during an unpleasant medical procedure. She finished the day by eating a good-sized take-out meal that we brought into the ICU from a nearby Mexican restaurant.


4/15/2002

Erin's problems of yesterday continued today. She again spiked a fever last night after having gone twenty-four hours without a fever. This time, however, the fevers continued throughout the day and at one time exceeded 104. In addition, Erin's facial swelling worsened, as her eyes were swollen completely shut for the entire day until about 7:00 this evening. In light of Erin's problems today, the doctors postponed her bone marrow biopsy until Thursday or Friday.

The doctors are more convinced than ever that Erin's problems are an allergic reaction to one or more of the antibiotics she has taken over the last few weeks (although we do not know which one). Thus, they are now taking more aggressive steps to get her fevers, rashes and swelling under control. We believe these steps are beginning to work, as Erin was finally able to open her eyes enough to watch television this evening. The doctors believe that Erin should show great progress in the next day or two and that she may be able to leave the hospital on Thursday or Friday.


4/14/2002

Last night was a difficult and frustrating night. After going more that twenty-four hours without a fever, Erin spiked a fever of about 102 last night at about 11:00. In addition, Erin experienced severe facial swelling. The swelling was so severe that her eyes eventually swelled completely shut. The swelling subsided a little today, enough so that Erin can now barely see what she is doing.

The doctors basically have been split throughout the past two weeks regarding what has been causing Erin's fevers, rashes and swelling. Some felt it was side effects of Erin's clofarex treatments. Some felt it was some form of infection. Yet others felt it was an allergic reaction to the myriad of antibiotics and other medicines Erin has been taking over the past two weeks. After last night's events and some pointed questioning from Mom and Dad today, the doctors appear to have finally reached a consensus. It now looks like Erin's current problems (including last night's fever) are due to an allergic reaction to one, or a combination, of the antibiotics she has been taking. This appears reasonable when considering that (i) two weeks of blood cultures have yet to indicate a bacterial infection, (ii) Erin has been off of clofarex for well over a week, and (iii) all the antibiotics Erin has been taking. The doctors now have proposed a "holiday" from all the antibiotics to let Erin recover.

Needless to say, every one has become very frustrated. Erin's moods generally have swung from anger at not being able to get out of the hospital to despair that "this is not going to work." In addition, Mom and Dad have been frustrated with seeing Erin suffer so much from both a physical and emotional standpoint. We are glad that there now seems to be a consistent course of action—it now looks like Erin will get out of the hospital Wednesday or Thursday at the earliest.

Rachel and Emily will return home to Kansas City tomorrow. Bret, on the other hand, will stay in Houston for the time being. He is staying at Erin's request to be present for the results of tomorrow's bone marrow biopsy and will stay until we are comfortable that Erin has stabilized from both a physical and emotional standpoint.


4/13/2002

Erin continues to progress today. She has now gone 24 hours without a fever, her blood pressure continues to stabilize and her rashes appear to be improving. She has in fact been feeling well enough to try and push the doctors into letting her leave the hospital tomorrow. At this point, the doctors want to keep her another day so that they can continue to monitor closely her blood pressure and blood counts. They do, however, admire her spunkiness in pushing for an early release.

Despite the physical progress, today has been a down day emotionally. Erin's twelve-day stay, and especially her visit to the ICU, have taken an emotional toll. She is very disappointed that she will not be released until after Rachel and Emily return to Kansas City. In addition, she is very anxious about the results of next Monday's bone marrow biopsy.


4/12/2002
Dr. Jeha

Erin was moved out of ICU today back to her original hospital room. Emily was especially happy because no one under 12 is allowed on the ICU floor, so we were fearful that Erin and Emily would not be able to see each other. Fortunately all five of us were together tonight to enjoy take-out from McDonalds.

Erin is still experiencing fever, rash and some periods of low blood pressure. To remedy Erin's low blood pressure she has been given IV fluids around the clock. Over the past three days she has accumulated about ten pounds of water weight. Needless to say, the additional weight is making her extremely uncomfortable. The doctors are now giving her lasix (a diuretic) to eliminate much of the additional fluid and will use other means to get her blood pressure back up to appropriate levels if her blood pressure drops to dangerously low levels again.

Dr. Jeha stopped by Erin's hospital room tonight and gave her a pep talk reassuring her that she will feel better again soon. Dr. Jeha also talked to us about how to interpret the results of next Monday's bone marrow biopsy. She indicated that we should not feel despair if leukemia blasts still remain in the marrow because it is often after the second round of treatment that they have seen the most progress against the disease. While it would be great to see a clean marrow, we should not lose hope if that is not the case.


4/11/2002

Erin experienced low blood pressure again early this morning. Thus, she is still in the ICU and will remain there until her blood pressure stabilizes. Her blood pressure appeared to stabilize and improve as the day progressed today, so we are hopeful that she will be released from the ICU tomorrow. Overall, Erin seems to be improving a little bit on all fronts, as her rashes appear to be receding and her fevers are becoming less frequent and less severe. Her main problem today has been severe itching from her rashes. Despite this discomfort, she never complains.

Erin enjoyed visiting with Ms. Thoeni and Ms. Donegan today, who drove down from Kansas City to see her. She also got to spend a little bit of time with Rachel, who came down to Houston with Emily for a long weekend. Now that Bret is in town, we can take care of simple things like picking up packages from the post office. One item waiting for Erin at the post office was particularly inspiring--a trophy from the Chlapek family (Jason Chlapek is a leukemia survivor). The trophy bears the following inscription, which so aptly describes Erin:

ERIN A. WILSON

Ultimate Champion

Courage, Valor, Endurance


4/10/2002

Erin remains in stable condition in the Intensive Care Unit, as her blood pressure has now stabilized. Yet she still is experiencing fevers, chills and severe rashes all over her body. The doctors still are not sure what is causing the fevers. It is particularly hard to tell in light of (i) all the medications she currently is taking, (ii) the discontinuance of her steroids and (iii) all the recent platelet and red cell transfusion activity. The doctors continue to search for bacterial infections by taking daily cultures, and they are giving her antibiotics just in case. All of her cultures to date, however, indicate that no bacterial infections are present.

Mom and Dad have been comparing notes with other patients undergoing clorafex treatment and have been quizzing the nurses and clinicians in the ICU. It looks like Erin's experience so far has been similar to those of other children who have received clofarex treatment. Thus, we believe (in our non-medical opinions, of course!) that Erin's symptoms probably are side effects of the clofarex treatments, rather than symptoms of a viral or bacterial infection. Nonetheless, we understand and appreciate the course the doctors are taking—they are taking no chances in case Erin does in fact have an infection.

Erin is in fairly good spirits under the circumstances, especially when considering how uncomfortable she is. She remarked to Mom today that sometimes things just have to get worse before they get better. We are hopeful that Erin will be released "back to the floor" tomorrow, especially so that she can see both Emily and Rachel upon their arrival tomorrow evening.


4/9/2002

Today has been filled with some very scary moments but at the time of this writing, (12:30 am, Wednesday) Erin is in stable condition. Late this afternoon Erin began to demonstrate symptoms of septic shock. Septic shock is a very serious condition in which infection overtakes the blood stream and without quick intervention will turn fatal. The doctors and nurses on the pediatric oncology floor administered first line intervention and Erin responded reasonably well. She was then transferred to the Intensive Care Unit because they could monitor her condition much more closely and respond more appropriately if her condition worsened. Her condition is currently stable but she will remain in ICU for at least tonight.

Bret arrived in Houston late tonight. Many thanks to the Cleary family and others who made it possible for Bret to make it down here so quickly. Rachel and Emily will still come down Thursday as planned.

There still remains no explanation for Erin's fevers. Needless to say, the utmost caution needs to be taken with Erin's condition until the fevers subside.


4/8/2002

Today can be characterized by 4 hour cycles of Tylenol and Benedryl. Erin's fevers remained constant throughout the day. About every 4 hours, Erin would start shaking from chills and we knew that her fever was on the rise. Once the fever would get calmed down then the itching would start and it would be time for more Benedryl. Due to the particularly strong rash and itching Erin exhibited tonight, the doctors now believe that the wrong drug may have been blamed for yesterday's allergic reaction. Erin had a similar experience a few years ago when many different antibiotics were introduced in order to eliminate the source of fevers. That time we never did determine exactly which drug caused the allergic reaction.

Late this afternoon, Erin became more alert and energetic. Erin insisted that Christy go back to the apartment to pick up some items we had neglected to pack and then stop by the nearby Boston Market to bring in dinner. Even though the hospital food is good here, it was time for a change. Since this was Christy's first trip back to the apartment since last Monday night, she found a full mailbox. Erin enjoyed reading all the cards she had received. Thanks to everyone for the gifts, well wishes and words of encouragement that were contained in the cards and letters.

Dr. Jeha stopped by today to check on Erin. Dr. Jeha told Erin that she was glad that Erin's white blood count was down to 0.1 and to keep her fingers crossed for the results of next Monday's bone marrow biopsy. Dr. Jeha was also interested in hearing how Erin felt during the treatments so that Erin's experiences could be documented. Even Erin's hospitalization had to be reported to the Food and Drug Administration within 24 hours.

For entertainment tonight, Erin and Bret played long distance Wheel of Fortune. Bret watched in Kansas City, Erin in Houston and when Bret figured out the puzzle, he would call Erin. Each time he called, Erin had already figured out the puzzle. Erin obviously gets her Wheel of Fortune skills from her Mother!


4/7/2002

Today was a frustrating, up and down day. During the 4:00 am vital sign rounds, Erin was found to have a fever of over 103 and very low blood pressure. She was quickly examined by the doctors and the decision was made to increase the amount of fluids she was receiving (an I.V. fluid bolus was given in order to fill the intravascular space, which increases blood pressure). She quickly moved back into the normal blood pressure range but the fevers have persisted all day long and have been less responsive to Tylenol.

As a result of the high fever this morning, another set of blood cultures were obtained. All cultures to date have remained negative so far. Also, another IV antibiotic and an anti-fungal medication were added to her list of medications. The antibiotic that was added (vancomycin) caused her to have a bright red itchy rash, so it has now been discontinued and something new will most likely be added tomorrow.

As expected, Erin received an infusion of platelets and a blood transfusion today. Shortly into the blood transfusion her blood pressure elevated so the doctors then decided to quickly remove fluid from her body by giving her lasix. Erin then again quickly stabilized back into a normal blood pressure range.

Erin has been very discouraged and disappointed today due to the persistent fever activity. Bret, Rachel and Emily are due to arrive in Houston on Thursday evening so Erin is very fearful that she will still be in the hospital while they are here. Erin did make Christy promise that Rachel and Emily would not take her bed at the apartment if she was not there to claim it.

Disappointment is . . .

When you don't get what you want when you expect it.

Erin don't be disappointed we'll see you soon!

Love, your friend,

Sam Panknin, SFT sixth grade


4/6/2002

Erin was clearly exhausted today. She slept for almost the entire day. Late in the afternoon she experienced a couple of bouts of nausea. Her fevers continue even though her blood cultures continue to show no signs of bacterial infection. The fevers seem to spike in twelve-hour intervals and respond well to Tylenol. Due to continued fevers, discharge from the hospital continues to elude us.

Based upon today's blood counts, the doctors are expecting that Erin will need both a blood and platelet transfusion tomorrow. In addition, her white blood cell count is virtually zero so she is taking both oral and IV antibiotics to help fight off any infections that could easily overtake her.

Erin's next bone marrow biopsy is planned for April 15th. Dr. Jeha indicated that she would not expect remission at this time but would hope to see some progress against the leukemia cells. Erin's next round of treatments are expected either the week of April 22nd or April 29th depending upon her degree of recovery from this first round of treatments.


4/5/2002

Erin had her Mom and two nurses moving fast this morning when what she thought was a runny nose turned out to be a nosebleed. After about 45 minutes, the bleeding was stopped, and she was given a platelet transfusion. During the time we were getting the nosebleed under control someone poked their head in the room and said they would need to draw blood for blood counts. Erin quickly replied that they could just take it from her nose.

After the excitement of the morning, Erin received her fifth Clofarex treatment. She seemed to have less discomfort after treatment today. Her biggest pain complaint today is from "bed body". She is good about getting out and walking around in the afternoon but she does tire easily.

We are not sure when Erin will be released from the hospital. The attending physician is closely watching her fever activity. It seems like she has one fever a day which is enough to keep the doctors concerned considering the extremely weak state of her immunity system.


4/4/2002

Erin's day began with a blood transfusion at 4:00 am. Between the leukemia and the chemotherapy, Erin's hemoglobin had been steadily decreasing over the past week. The doctors wanted to start early to allow enough time for the transfusion to settle into her bloodstream before beginning her fourth clofarex treatment.

With today's treatment we tried to alleviate the side effects by giving Erin a dose of Tylenol before she complained of pain. She still experienced arm pain, headache and discomfort for about an hour after the treatment but did not develop a fever with the treatment. Thus, we consider today's change of course as a moderate improvement.

Tomorrow will be Erin's fifth and final dose for this first round of Clofarex treatments. Shortly thereafter she should be able to discontinue the pills that have made her so sleepy. We are anxious to see how much energy she regains after this first tough week of treatment.


4/3/2002

Erin received her third of five clofarex treatments today and she again experienced arm pain with fever. Her nurse marveled at how consistent her reaction is from day to day. Erin asked for Tylenol at exactly the same time today as yesterday. Her discomfort lasts for about one hour following treatment and then she is pain free for the remainder of the day. She will remain hospitalized until she can remain fever free for 24 hours. Thus, we expect that she will be discharged no earlier than Saturday.

Erin was upset to learn that she would have to remain in the hospital for her remaining treatments. The main reason she was upset was because she has a comfortable double bed waiting for her back at our apartment. She has yet to find a comfortable hospital bed.

Erin spends the majority of her day sleeping as a result of one of the medications she is given to manage the side effects of the chemotherapy. Erin jokes that the medication doesn't actually lessen the side effects—it just makes you sleep so you don't know that you are uncomfortable.

If you would like to give Erin a call, her hospital room phone number is 713-745-8579. She seems to be most alert in the morning between 8:30 and 11:00 and from about 7:00 to 9:00 in the evening.


4/2/2002

Erin had a difficult night after her first clofarex treatment. She did not particularly feel well during the treatment, complaining of pain in her arms. She continued to feel poorly after the treatment, feeling tired and cold. At about 7:30 last night Christy took Erin's temperature only to find out that Erin had a temperature of 103. We then brought Erin in to the hospital so that she could be monitored on an in-patient basis. Erin's temperature subsequently rose to 103.8, but shortly after receiving some tylenol, her fever broke and she felt fine and stayed fever-free the rest of the evening and the next morning.

We believe Erin's temperature was a side effect of the drug because she experienced the same symptoms today after her second clofarex treatement. She will stay in the hospital for the time being, at least until we know for sure that her fevers are not due to any infections. She is very tired now and sleeps a good portion of the day due to all the medications she takes to manage the clofarex side effects.

So far, the clinicians are encouraged (and are pleasantly surprised) by the progress the clofarex appears to be making. Mom and Dad, however, are taking a wait-and-see attitude—they have been disappointed several times before by encouraging early results that eventually have not panned out.

We have been very impressed with the MD Anderson inpatient pediatric facility. The facility is relatively new and was financed by donations by George Foreman. A very pleasant surprise has been the food. This is the only hospital at which Erin has given a thumbs up on the food—quite an accomplishment considering that Erin is very finicky and has sampled hospital cuisine throughout the U.S. Not only is the food good, but it is delivered to her room by waiters dressed in formal attire!


4/1/2002

Today was a very long day. We arrived at MD Anderson at 7:00 this morning and did not arrive back home until 6:30 this evening. Erin underwent blood tests, a spinal tap and a bone marrow aspirate in the morning. She also met Dr. Jeha, who explained the clinical trial and the new medicine (clofarex) she will be taking. Erin was pleased to learn that clofarex will not make her hair fall out and joked that she will once again surpass Dad in the hair department. Erin is the 21st pediatric patient to be treated with clofarex.

Erin began her clofarex treatment in the afternoon. She will repeat this treatment each day for the next four days and will then undergo another five-day round of treatment in about three to four weeks. Erin receives her clofarex treatment IV infused over one hour, followed by one hour of IV fluids. If the treatment is successful, she would likely undergo monthly treatments until she is able to try another transplant.

Of the five patients in the treatment room, Erin was the only one from the United States. We enjoyed meeting the other families, who come from Turkey, Kuwait, the United Arab Emirates and Mexico.

© 2002. Bret and Christy Wilson.