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7/31/2002

(Day 18)

Erin spent a relatively comfortable and quiet day today. She has been unconscious all day today due to her pain medication and appears to have rested comfortably all day. Her liver situation is "stable" today in that it has appeared neither to improve nor get worse. We learned today that Erin has probably lost her kidney function permanently. If she overcomes her liver situation, she will have to undergo kidney dialysis on a regular basis and perhaps ultimately a kidney transplant.

We will continue to watch Erin's liver functions for signs of improvement or further deterioration. We expect to know in the next two to three days whether she will recover her liver functions. If she is unable to recover her liver function, we will likely change her course of treatment so that her remaining time with us is painless and as comfortable as possible. In the meantime, we will honor Erin's stated wish of pursuing all reasonable treatment options. We know that if Erin goes, she will have gone the way she wanted--fighting to the very end and not succumbing to the leukemia itself.


7/30/2002

(Day 17)

Erin's condition today is described as stable. Based upon lab results and ultrasound tests, her liver does not appear to be deteriorating further. Yet there have not been any definitive signs of improvement. Dr. Gilman stated that signs of improvement may not be visible for two to three more days. In the meantime, we watch and wait.

Erin underwent kidney dialysis again this morning. The kidney doctors believe that her kidneys will recover once her liver recovers. Erin managed to rest comfortably this morning, but had periods of agitation in the afternoon. Erin is still incoherent and unable to communicate, which makes it difficult for us to know how to help her if she is in pain.


7/29/2002

(Day 16)

Erin's situation deteriorated rapidly overnight last night, as this morning's lab tests basically revealed that Erin was suffering both liver and kidney failure. As a result, Erin was rushed to the Intensive Care Unit first thing this morning. The clinicians conducted several tests and concluded that Erin is suffering from a severe case of veno-occlusive disease.

Erin underwent several procedures (including kidney dialysis) in the morning to clear toxins from her blood stream. In the afternoon, she underwent procedures to try and stop further liver deterioration and to buy time to let the liver regenerate itself.

Erin basically is incoherent right now and does not realize the extreme seriousness of her situation. Despite her incoherence, today has been a constant struggle with the ICU nurses--Erin is constantly yelling, screaming and trying to climb out her bed. Everyone who has tried to restrain Erin today has commented on her physical strength. We hope this strength will help her through this ordeal.

We do not know where this situation will lead. At one point, it was possible that Erin would not make it through the day. Right now, we can say that Erin is in a better position at the end of the day than she was at the beginning of the day. We are taking things hour-by-hour now. We will wait to see what tomorrow brings.


7/28/2002

(Day 15)

Erin experienced another difficult day today. Although her kidney readings have stabilized, her bilirubin level (a key liver function reading) increased substantially again today. The clinicians run labs twice a day and conduct other tests (such as ultrasound tests) to monitor her liver function. Yet it is still too early to know how serious Erin's liver problems are. There is not much we can do at the moment except wait and see whether her liver problem will resolve itself. We basically live from test to test. Needless to say, we are very concerned.

Erin is extremely uncomfortable and often is confused and incoherent. She is unable to sleep for more than twenty-minute intervals because of her pain and the need to go to the bathroom. This requires that Christy or Bret stay awake and help her. To meet this need, we have adopted a shift approach so that one of us is awake to help Erin while the other one of us rests.


7/27/2002

(Day 14)

Today’s lab results finally pieced together the discomfort and kidney function difficulties that Erin has been experiencing. Today’s lab results showed a substantial increase in her bilirubin level (liver) and creatinine and BUN levels (kidney). Based upon today’s labs, Erin has now been diagnosed with veno-occlusive disease (VOD). VOD is a disease that affects blood flow in the liver and can be a very serious post-transplant complication. The doctors are hoping that Erin’s case will be a mild one and are at this point still considering her case mild. Until her bilirubin, creatinine and BUN levels begin to taper off and decrease, we will not know how serious her case will ultimately be. All of the changes in Erin’s medications and actions the doctors began taking yesterday is the treatment plan for VOD. Thus, not a lot has changed regarding her care for the time being.

Symptoms of VOD are abdominal fluid gain, abdominal pain, thickened lining of the gallbladder, increased need for platelets (although she has not needed any the past two days), confusion, and decreased liver and kidney functions. VOD often is diagnosed by ruling other problems out and a combination of the above symptoms. Since this is Erin’s second transplant, she was at a higher risk for developing this disease. It is a result of the high dose chemotherapy she has been given.

Erin has been able to rest today. In fact, if it weren’t for today’s lab results our observation would have been that she has improved overall. Erin’s white blood cell count continued to climb today--it is now within levels considered to be normal. Her ANC is 2,300 and her red blood cells and platelets are still in the low range, but steady. The red blood cells and platelets trail the white cells regarding recovery.


7/26/2002

(Day 13)

It was another sleepless night and difficult day for Erin. Erin's kidneys have now staged a revolt against all of the medicines that she has received over the past few weeks. This is not an uncommon development post-transplant, yet it is a situation that the doctors are quickly working to rectify. All of Erin's medications that are considered hard on the kidneys have been discontinued, and medications to increase kidney function have been started.

Another factor causing Erin's discomfort is that she has put on about 15 to 20 pounds of water weight over the past three days. The weight seems to be located primarily in the abdomen area so it is very hard for her to get comfortable. The water retention is believed to be caused by the "engraftment syndrome". Rapid engraftment, which Erin is experiencing, can cause the capillaries to leak and attach fluid to her tissues. The doctors have now started medications designed to pull the fluid back into her bloodstream so it can expelled from her body.

Speaking of engraftment, Erin's ANC has now risen to over 800. She is experiencing a strong and rapid, but painful, engraftment. The confusion that Erin began to experience yesterday has continued into today. Dr. Gilman is attributing the confusion to sleep deprivation, although she did have her more lucid moments today. This morning, Erin complained of a headache when Dr. Gilman was in to examine her. Her asked her where her headache was located and she responded, "In my head."


7/25/2002

(Day 12)

Erin had a very difficult night last night. She hardly slept at all, complaining of severe abdominal pains. Her discomfort continued throughout the day. She is under so much pain medication now that she is incoherent at times. For a while, we were afraid that the abdominal pains were due to liver or gall bladder problems. After a series of tests today, the clinicians determined that the pain is due to fluid build up in the abdominal area. The fluid build up is characteristic of a condition known as "engraftment syndrome".

Engraftment is now in full swing, as Erin's white blood cell/ANC counts are on the rebound. Erin's ANC was 200 today, compared to yesterday's zero. This means that her new stem cells are now producing white blood cells. Her red blood cells and platelets were still very low, requiring red blood cell and platelet transfusions. Erin is burning through so many platelets now that she requires daily platelet transfusions. The platelet use has been linked to her mouth sores. With her counts coming in, Erin's mouth sores are beginning to heal.

Erin received a special visit from the Ricken family today, who stopped by while enroute from St. Louis to Gerry's boyhood home in the thriving metropolis of Garden Plain, Kansas. Erin talked to them briefly before promptly drifting into a drug-induced sleep. Upon awaking after their departure, Erin asked if the Rickens were ever going to drop by—she is on so much pain medication that she couldn't even remember their visit.


7/24/2002

(Day 11)

Erin’s ANC (measure of infection fighting ability) dropped back to zero today. It is not uncommon in the very early stages of engraftment for her blood counts to bounce up and down. Her lab results reveal that engraftment is continuing to occur as the type of cells considered to be the early white blood cells are still increasing.

During Erin’s physical exam today she complained of pain when pressure was applied to her stomach. An abdominal ultrasound was performed this afternoon. We have not received any official results. Early impressions did not reveal anything serious, but Erin’s liver appeared be enlarged. An enlarged liver is somewhat common in patients that have received high doses of chemotherapy.

Dr. Gilman continues to reassure Erin that she should feel better by this weekend as her white blood cell continues to increase. Despite the reassurances, Erin’s spirits are a little low—she is getting really tired of constantly feeling crummy.


7/23/2002

(Day 10)

We may now be seeing signs of engraftment. Erin's white blood cell/ANC counts came in at 17 today, compared to yesterday's zero counts. In addition, Erin complained of feeling achy today. The clinicians believe that these symptoms may be signs of engraftment. If so, we expect to see solid increases in counts over the next few days and that Erin will begin to feel better soon.

On another positive note, there are no signs of any bacterial infection from Erin's blood cultures of a couple of days ago. Considering that Erin basically has had zero white blood cell/ANC counts since her return from Houston two months ago, we have been extremely fortunate that she has not developed any bacterial or viral infections over that time period.

Erin is under the care of a special resident physician tonight, who came in to pay Erin a visit this afternoon. Tonight's resident on call in the bone marrow transplant unit is Angie Myers, a second year resident at Children's Mercy. Angie is a cancer survivor who was a patient at Children's Mercy during her teenage years. She also happens to be the daughter of Erin's kindergarten teacher, Carol Myers.


7/22/2002

(Day 9)

Erin's counts now have hit rock bottom—her "absolute neutrofil count" (the key indicator of infection fighting ability) is now zero. We expect engraftment to begin any day now, in which case her counts will begin to recover. We look forward to receiving her blood counts each morning, looking for signs of engraftment. In addition to looking for an increase in blood counts, the doctors are monitoring Erin's kidney and liver functions very closely.

Erin was awake quite a bit more today than she typically was last weekend. She still suffers from mouth sores, making it very difficult for her to talk. As one of Erin's nurses mentioned today, she really misses being able to talk to Erin.


7/21/2002

(Day 8)

Erin spent most of the day napping. As Erin's nurse commented, "If you are going to be in pain, you might as well sleep through it". Erin's pain medication dosage was increased today to try to make her more comfortable. Erin did experience some nausea again today.

Erin did not have any fevers today but the blood cultures taken yesterday did reveal a bacterial infection. The type of infection that grew out of the cultures is one that can also be caused by contamination in handling the blood samples. Thus, cultures were taken again today to verify if the bacteria was truly in Erin's bloodstream or caused by an outside contamination.


7/20/2002

(Day 7)

Today was a quiet day, as Erin spent a good portion of the day napping. Erin's nausea has ceased for now, but her mouth sores continue to be a problem. The doctors have increased her pain medication dosages, which has helped keep her pain under better control. In addition, she has been using "magic mouth wash" to help her take some of her oral medications.

This afternoon, Erin spiked a low-grade fever, which seems to come and go. The doctors took blood cultures to determine if she has a bacterial infection, and they have placed her on antibiotics as a precautionary measure. These fevers may be a sign that Erin is generating white blood cells. If so, this is a good sign because it would mean that engraftment is beginning.

Erin received a special surprise today. Jackie Rafferty, Erin's former nanny, dropped by for a visit. Jackie now lives in Colorado and had not seen Erin in about four years. Jackie still wears a bracelet bearing Erin's name, which Jackie vowed several years ago to wear until Erin is cured.


7/19/2002

(Day 6)

Erin's discomfort continued last night and today, but subsided some this afternoon. Her mouth is still very sore, making it very difficult for her to speak. As a result of the past few days of discomfort, Erin has had understandable moments of anger and anxiety.

On a positive note, some of Erin's blood counts are relatively strong considering that she is only seven days post tranplant. Her white blood cell count is 500 and her "absolute neutrofil count" was 108. Her platelet levels were low, however, requiring a platelet transfusion today.

Dr. Gilman mentioned two possible reasons for Erin's relatively high white blood cell/ANC counts. One reason is that Erin's donor generated a high volume of stem cells. The other possible reason is that Erin may already begun engraftment, although it still is a bit early for engraftment to begin. No matter what the reason, Dr. Gilman considers these higher-than-normal WBC/ANC levels a favorable development in light of Erin's current susceptibility to infection.


7/18/2002

(Day 5)

Last night was a restless night and today has been difficult, as Erin continues to suffer from mouth sores, swollen facial features and ongoing bouts of nausea. She is very uncomfortable and, to use her words, constantly feels "yucky." Erin is taking anti-nausea medication throughout the day and now is on continuous pain medication. Despite her discomfort, Erin does not complain. As always, she is very stoic—she bears this burden as if it were a normal, expected part of life.


7/17/2002

(Day 4)

Today has been somewhat of a difficult day for Erin. She experienced nausea this morning and had been unable to keep anything down. Thus, she now takes all of her medicines and her daily nutritional needs by IV. In addition, Erin's mouth sores are getting worse, although she has been able to manage the pain through occasional doses of morphine. Erin's blood counts continue to decrease--her white blood cell counts are now down to 300 and should reach zero in the next day or two.

We would like to extend best wishes our friend, Megan Cleary, who will undergo cochlear implant surgery tomorrow. Megan has been hearing impaired since an early age and recently lost almost all of her hearing. This procedure should help Megan regain virtually all of her hearing. Best wishes to Megan and all of the Cleary clan, who have been a huge help to us over the past year!


7/16/2002

(Day 3)

As expected, Erin is beginning to develop mouth sores. As a result of the pain, she is now eating less. She takes morphine to control the pain and will probably start taking nutritional supplements to make up for her reduced calorie intake. Erin's blood counts are gradually declining. She underwent a platelet transfusion today, and her white blood cell count should reach zero in a few days.

Erin received several visitors to her room today. Aunt Roxann and cousins Caitlin and Cameron came by with lunch this afternoon, and the Borellis dropped by for a visit tonight.

It was exactly a year ago today when Dr. Woods called Bret at work to give him the bad news that Erin had relapsed. Even though we knew at the time that a long road lay ahead, we never imagined that the next year would include two (instead of just one) transplants and an extended stay in Houston in addition to Seattle. Yet we are very grateful that Erin is still alive today, is still fighting and still has a chance for cure.


7/15/2002

(Day 2)

Today was a quiet but good day for Erin, as she did not experience any bouts of nausea. The doctors are closely monitoring Erin's electrolytes and are making adjustments in her medications daily. These medications, which suppress the potential shock to Erin's system from the donor stem cells, cause her to lose certain nutrients. Erin is still able to eat although her menu choices are very limited. Her mouth and throat are sore due to the strong doses of chemotherapy she received last week to prepare her for transplant.


7/14/2002

(Day 1)

Erin experienced a blah day today, experiencing bouts of nausea in the morning. To help with the nausea, she was given sedative medications and thus slept the entire afternoon. Erin was barely able to muster up a "Hi" to Fr. Ron (our pastor at Queen of the Holy Rosary) when he stopped by for a visit. She did eat dinner this evening, so hopefully her stomach will be more agreeable tomorrow.


7/13/2002
Erin during Transplant with the Transplant Team

(Day 0)

Erin's day began early today. Her donor's stem cells arrived on the floor at about 7:00 this morning, and the actual transplant began at 7:30 with Christy, Bret and Rachel present to witness the event. The transplant went smoothly and was completed within 90 minutes. Erin spent the rest of the day resting and, except for a bout of nausea around noon, generally felt well throughout the day.

The stem cell's transport package indicates that Erin's donor lives somewhere in the Pacific time zone. Thus, we are guessing that she lives somewhere on the West Coast. Every one remarked that it would be interesting if the donor was from Seattle, the site of Erin's first transplant.

Happy Transplant Day!


7/12/2002

Today was another day of rest. Erin had stomach pains throughout the day as a result of her five days of chemotherapy, but has otherwise felt relatively well. Her room received a steady stream of visitors today, including Aunt Myra and some of Christy's Hallmark friends (Hallmark is basically right across the street from Children's Mercy Hospital).

The main activity today is going on somewhere else in the United States. Somewhere today, the donor's stem cells were harvested, and they probably are en route to Kansas City at this very moment (8:30 pm this evening). We expect the cells to arrive around 1:00 Saturday morning and the transplant to take place at about 7:00 Saturday morning.

On this eve of Erin's second transplant we have much to be thankful for. There were times in February, March and April when we were not sure that we would get to this point. Yet, here we are. The odds for ultimate cure still may be long, but Erin still has a chance. We are grateful to many people for getting us to this point: the doctors and nurses at Children's Mercy in Kansas City and MD Anderson in Houston, who stuck with us and fought no matter how hopeless the odds seemed at times; our friends and colleagues at Hallmark Cards and H&R Block, who have granted us the flexibility to do whatever is necessary to continue Erin's fight; Erin's donor, whose selflessness has given Erin another chance at cure; ILEX Oncology, who developed the clofarex drug that permitted Erin to once again achieve remission; and all of our friends and family who lend their support in countless ways. Thanks to all!

Erin with Bridget McLaughlin, Rachel and Emily--Transplant Eve

7/11/2002

Today was a day of rest. Erin is beginning to feel the cumulative effect of all of this past week’s chemotherapy. She was somewhat tired and uncomfortable throughout the day, beginning this morning with complaints of heartburn. She was feeling better towards the end of the day and enjoyed watching one of her and her dad’s favorite new television programs—the Jamie Kennedy Experience.

Many thanks are in order to our friend Gerry Ricken for letting us “borrow” his website while Erin’s new website is under construction. Gerry got the temporary website up and running in a matter of hours so that people can keep track of this critical phase of Erin’s treatment. Thanks Gerry (and you too, Mary Beth)!


7/10/2002

Erin has now completed her pre-conditioning chemotherapy, with the last of her fludarabine and melphalan treatments. Thursday and Friday will be rest days before her transplant on Saturday morning. Erin had a steady stream of visitors today, a luxury she did not have during here first transplant in Seattle. It is great to once again be near such a wonderful support network of family and friends.


7/9/2002

Erin underwent her fourth of five fludarabine treatments today and her first of two melphalan treatments. She finishes all of her pre-conditioning chemotherapy treatment tomorrow and will then take a two-day rest before transplant. Erin’s transplant has now been moved to Saturday morning because the actual stem cells are now scheduled to arrive about 1:00 am Saturday morning.

Erin has now settled in to her Childrens’ Mercy quarters. Christy spent a good portion of the day working a jigsaw puzzle, and Erin and Christy finished the evening with a game of scrabble. The highlight of the day was when our friends and neighbors, Ann and Steve Rueb, dropped by with Minsky’s five-star cheese pizza.


7/8/2002

Erin underwent her third of five fludarabine treatments this morning. In addition to her chemotherapy, Erin underwent bloodcounts. Her white blood cell count has now dropped to 100, but her red blood cells and platelets were high enough that she did not need any transfusions today.

After her treatment, Erin went to the transplant area to pick her room where she had a choice of three rooms. The room Erin picked was the smallest of the three, but had the largest bed for Mom or Dad to sleep on. Erin checked in to the hospital tonight. After dinner tonight, the whole family accompanied Erin to move her in to her new quarters. Among the items that were moved in were games and a card table for working jigsaw puzzles.

Erin’s direct line phone number at Children’s Mercy is 816-460-1044, ext. 4623. The toll-free number is 1-866-512-2168. Erin may receive phone calls between 9am and 9pm. In addition, she may receive visitors in the transplant unit so long as they are free from cold and flu symptoms.


7/7/2002

Erin returned to Children’s Mercy today for another round of fludarabine. Her visit was short, as she completed her treatment in less than an hour. She spent her last day before her inpatient stay by watching a movie with her family and making a poster to wish her Milburn teammates luck in the upcoming swimming championships. Christy and Erin were busy today packing and preparing for Erin’s one-month stay at Children’s Mercy. Perhaps the most important item to be packed was the bevy of carry-out menus that Erin has collected this past week. At this point, Erin’s donor has likely begun taking GCSF shots to boost her stem-cell production in anticipation of Friday’s transplant. The clinicians have confirmed that Erin’s donor is the 54-year-old woman who is an “8 out of 10” match.


7/6/2002

Erin began her pre-transplant chemotherapy today. She was treated today on an out-patient basis with a round of fludarabine (which is in the same family of chemotherapy drugs as clofarex, the drug she receive in Houston last spring). In addition, she underwent a red blood cell transfusion. The treatment went well. Erin feels fine and is in very good spirits.


7/5/2002

Erin went to the clinic today for a platelet transfusion and a physical examination with Dr. Gilman. In Dr. Gilman’s view, Erin is ready to go. She will begin her pre-transplant chemotherapy conditioning treatment tomorrow.


7/4/2002

Erin had a full day of 4th of July activities today. Despite some clouds and rain, she participated in pool party activities at the Clearys’ annual 4th of July pool party, acting as referee for the water volleyball competition—in her view, both teams cheated just at about the same level. In the evening, she was able to attend the annual fireworks display at Milburn Country Club. There, the Milburn swim team presented her with a signed swim team T-shirt, wished her luck with her transplant and expressed their hope that she could swim with the team again next year.


7/3/2002

Today was a clinic day. Although Erin’s white blood cell counts remained constant at about 500, her absolute neutrofil count actually improved to about 120 from about 75 (1500 to 2500 is the norm). Erin’s remaining counts were stable, so she did not have to undergo any platelet or red blood cell transfusions. As Erin is now nearing transplant, Dr. Gilman decided to discontinue Erin’s daily GCSF treatments. Thus, our friend and neighbor, Lois Moushay no longer has to come over each evening to administer those dreaded GCSF shots.

Erin’s transplant schedule has now fallen into place. She will begin pre-transplant conditioning this Saturday on an outpatient basis. She will continue her outpatient treatments until Monday, when she will check into Children’s Mercy at about 8:00 Monday evening. The actual transplant will take place on Friday, July 12. We expect that the donor cells will arrive around 9:30 Monday evening, which means that the donor is probably from one of the coasts.


7/2/2002

Today was a clinic day. Although Erin’s white blood cell counts remained constant at about 500, her absolute neutrofil count actually improved to about 120 from about 75 (1500 to 2500 is the norm). Erin’s remaining counts were stable, so she did not have to undergo any platelet or red blood cell transfusions. As Erin is now nearing transplant, Dr. Gilman decided to discontinue Erin’s daily GCSF treatments. Thus, our friend and neighbor, Lois Moushay no longer has to come over each evening to administer those dreaded GCSF shots.

Erin’s transplant schedule has now fallen into place. She will begin pre-transplant conditioning this Saturday on an outpatient basis. She will continue her outpatient treatments until Monday, when she will check into Children’s Mercy at about 8:00 Monday evening. The actual transplant will take place on Friday, July 12. We expect that the donor cells will arrive around 9:30 Monday evening, which means that the donor is probably from one of the coasts.


7/1/2002

Erin's counts are continuing their gradual climb. Today's white blood cell counts came in at 600, compared to last Friday's 400. Erin's absolute neutrophil count, however, continues to remain very low at 78. The absolute neutrophil count ("ANC") is the critical measurement of Erin's infection fighting ability. A normal ANC range is between 1000 and 2500.

In addition to blood counts, Erin underwent allergy testing at the clinic today. The tests came back fine, which means that Dr. Gilman can use his preferred antibiotics in case Erin comes down with an infection during the transplant. The allergy testing was somewhat unpleasant as it required Erin to take several shots. Erin got rich through the process because of some bribe payments she received from Christy. Erin ended up using the bribery proceeds to buy Christy lunch after today's clinic visit.

© 2002. Bret and Christy Wilson.