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Erin

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12/31/2001

(Day 40)

We received the results from last week's bone marrow aspirate today. The results were good. First of all, they indicate that Erin still is in remission. Secondly, they indicate that her new marrow is producing all three of the major blood cell types: white blood cells, red blood cells and platelets. Her next bone marrow aspirate will be around Day 80, hopefully in anticipation returning home to Kansas City a few weeks later.

Erin spent a rather uneventful New Year's Eve today—reading, catching up with school work and watching TV. We plan to enjoy the Seattle New Year's firework display tonight from our apartment's vantage point, which overlooks downtown Seattle, the Space Needle and Mount Olympus.


12/30/2001

(Day 39)

Today was Erin's twelfth birthday. Erin and Dad celebrated by going out to Pagliacci's for pizza this afternoon. When they returned home, Erin blew out candles on her ice cream birthday cake and opened gifts while Rachel, Emily and Mom watched through an Internet Video connection. Although the connection was a bit primitive, every one was able to sing "Happy Birthday" to Erin as she blew out the candles. She enjoyed several phone calls from her friends—especially the Cleary family, who all sang Happy Birthday to her over the speaker phone. We look forward to celebrating Erin's thirteenth birthday together next year in Kansas City.


12/29/2001

(Day 38)

Erin enjoyed a break from the clinic today. She spent some time this afternoon visiting the Pacific Science Center. She only stayed for about an hour, however, because it began to get crowded and she felt that other children were staring at her. She spent the rest of the day resting. Erin wishes to congratulate her cousin, Jeff, and her new cousin, Tiffany, on their wedding today.


12/28/2001

(Day 37)

Today was a busy day from a clinical standpoint. In addition to her daily blood draw, Erin underwent a chest x-ray at Children's Hospital and physical examination at the Seattle Cancer Care Alliance. The physical went well—the clinicians found no major signs of graft versus host disease. In fact, things went so well that Erin does not have to go into the clinic this weekend for blood draws.

Erin enjoyed two high points today. During her visit to Children's Hospital, she was able to stop by and visit with Shauna, her Transplant Day nurse. Her other highpoint was when SCCA staff members surprised her with birthday gifts and by singing "Happy Birthday" in advance of Erin's twelfth birthday on Sunday.


12/27/2001

(Day 36)

Erin underwent her "Day 28" spinal tap and bone marrow aspirate today (Yes, we know. Today is Day 36). The procedure went fine and Erin flew through it without a hitch. The clinicians conducted this procedure for two reasons. First, they want to examine Erin's bone marrow and spinal fluid to make sure there are no signs of leukemia. Second, they treated Erin's spinal fluid with chemotherapy during the procedure to kill any leukemia cells that may have hidden in her spinal fluid trying to escape the onslaught of chemotherapy she received prior to her transplant.

Erin enjoyed going through three boxes of Christmas gifts she received from the Santa Fe Trail sixth grade today. She is beginning to feel strong enough to get out of the apartment more often. Today, for example, she assisted Dad with the grocery shopping.


12/26/2001

(Day 35)

Erin began decreasing her steroid dosages today. If everything goes according to schedule, her steroid dosages will decrease gradually until she discontinues her steroids on February 21. The clinicians now will pay even closer attention for signs of graft versus host disease because "GVHD" symptoms are more likely to flare up as Erin's steroid dosages decrease. According to Dr. Woolfrey, Erin probably is at the end of a "honeymoon period" when it comes to GVHD and we should expect to see more symptoms soon. If the symptoms appear, the clinicians likely will stop decreasing the steroid dosage and reinstate her previous dosages.

Erin has settled into an outpatient routine. She currently takes nine different drugs throughout the day to prevent infections and control GVHD symptoms. In addition, she receives intravenous hydration over a 12-hour period each night. She exercises each day by walking six blocks back from the clinic to the Pete Gross House. She tends to sleep alot during the day because her IV hydration and steroids make it difficult for her to sleep at night.

For the first time since Transplant Day, Erin went out to eat at a restaurant with the family—the Kingfish Cafe in Seattle. She may go out to eat so long as she goes during "off peak" hours. The big topic at dinner was where Erin wants to go on her post-transplant celebration trip. Although she hasn't decided yet, she has narrowed her choices down to a place with "good food, shopping, and things to see."


12/25/2001
Emily, Rachel and Erin together again

(Day 34)--Christmas Day

We received two special Christmas gifts today. First, Erin received a day off from the clinic. She will resume tomorrow. More importantly, however, Emily's fever disappeared today. Thus, we were able to enjoy Christmas dinner together as a family tonight. On this Christmas Day, we would like to again thank all of our family and friends for their thoughts, prayers and support. We appreciate the help and support that each of you have rendered in your own way.


12/24/2001
Rachel and Emily

enjoying the Seattle skyline

(Day 33)

In addition to her blood draw today, Erin underwent a physical examination at the clinic. The clinicians are focusing on symptoms of graft versus host disease and Erin's nutrition levels. Erin is doing well nutritionally and has now discontinued her intravenous feeding. She still remains on intravenous hydration until her hydration levels reach certain levels. It is important to maintain a high hydration level to protect Erin's kidneys from the side effects of some of her medications. From a graft-versus-host-disease standpoint, the clinicians are looking for skin rashes and swelling. Erin is showing minimal "GVHD" symptoms now, but that probably will change over the next four to six weeks as Erin tapers off of her steroid treatment.

Emily's low-grade fever persists. Thus, we will not be spending Christmas together as family. Although we are disappointed in this development, we are pleased that Erin has been able to spend a lot of time with Rachel. Emily's fever has been very stubborn, so it is possible that Emily will not be able to see Erin at all during this visit. We are all looking forward to being together next year for Christmas 2002.


12/23/2001

(Day 32)

Emily's fever continues, so we are still keeping her away from Erin. Mom remarked that maybe Emily is the one who is immuno-suppressed, and Dad remarked that maybe we should rename the website as the Emily Catherine Wilson Update. Despite Emily's fever, Mom, Dad, Rachel and Emily enjoyed touring the Queen Anne section of Seattle today while Erin rested at the apartment. We also enjoyed steaming crab that we bought at the Pike Street Fish Market yesterday. Today at Erin's clinic visit, Christy met the Gillilands from Kansas City. Mrs. Gilliland is also undergoing a bone marrow transplant here in Seattle.

Erin spent time today working on her "Reflections" composition for school. The theme for the composition was "I hold in my hand." Here it is:

I Hold in My Hand

by Erin Wilson

I hold in my hand the gift of life and the opportunity to do something good.

I hold in my hand the chance to beat the odds.

I hold in my hand fear that when I go out in public I am always being stared at.

I hold in my hand the challenge of keeping my tears when I know others are thinking or talking bad about me.

I hold in my hand the knowledge and the feeling of pain, both mentally and physically.

From the pain, I hold in my hand the inspiration to see the light at the end of the tunnel.

I hold in my hand the need and the stride to be strong, brave, and courageous.

I hold in my hand the faith and the thankfulness to know that there are people who care.

I hold in my hand the blessing of prayers from family and friends.

I hold in my hand the belief that if you set your mind to something you can do any thing.

I hold in my hand . . . .


12/22/2001

(Day 31)

Even though today is a Saturday, Erin went to the clinic for her daily blood draw. She goes for her blood draw every day, regardless of whether it is a weekend or holiday. Rachel accompanied Erin on her visit and got to meet members of the Seattle Cancer Care Alliance team. Emily developed a fever last night, so we have to keep her away from Erin until the fever subsides. One of the parents stays with Emily at the nearby Residence Inn and the other stays with Erin at the Pete Gross House. Thus, we once again are physically separated, this time by a few city blocks rather than half a continent.

Erin has now been on steroids for 11 days. She will begin to reduce her steroid dosages the day after Christmas. The daily dosages will decrease gradually to zero over a four-week period. The steroid's side effects are beginning to show. These side effects include weight gain, increased appetite, sleeplessness, anxiety and moodiness. She mentioned last night that she is "unable to concentrate" and thus has not been interested in reading her e-mails or "IMing" her friends. Despite these side effects, Erin enjoyed the word games and activities books that Queen of the Holy Rosary School sent her.


12/21/2001

(Day 30)

The whole family is now reunited in Seattle—the first time we all have been together in two months. Emily was so excited to see Christy today that she barfed on the way from the airport to the Pete Gross House. She also barfed in November when she saw Christy for the first time in five weeks, so we now know how to tell whether Emily is excited to see some one.

Erin has lost her peach fuzz and her eyebrows again—this time from the conditioning phase radiation and high-dose chemotherapy. She is sensitive about her appearance right now and refuses to have her picture taken. She refers to herself as a "freakoid." This should be the last time that she loses her hair. It should begin to grow back within the next month.

We enjoyed a take-home pizza dinner tonight from Pagliacci's--our favorite pizza joint in Seattle. We are very glad to be together once again and thankful that Erin is doing very well. We are especially grateful to our friends who in various ways made sure this trip took place.


12/20/2001

(Day 29)

Erin visited a foot doctor today for a potentially ingrown toe nail that could have become infected. The doctor ended up surgically removing the ingrown nail and giving her an antibiotic. Her toe is fine now. In addition, the clinic is still monitoring Erin's blood pressure closely. Her blood pressure was a little high today so she is now taking some blood pressure medication. Despite the visit to the foot doctor and the blood pressure medication, Erin characterized the day as "nothing out of the ordinary."

Erin's blood counts continue to do well. Both her red blood cell and platelet counts now are close to normal levels. Her white blood cell counts remain at very high levels, primarily due to the steroids she is taking for her graft versus host disease. The clinicians are reducing the amount of Erin's IV nutrition because she is beginning to eat more solid foods, although only a few foods are appealing to her. Erin admitted today that she now is thinking about Minsky's 5-Star Pizza in Kansas City.

Perhaps Erin's highlight of the day was participating in Rachel's 15th birthday get-together. Erin enjoyed seeing and speaking to Rachel's friends through an Internet video connection. Happy Birthday, Rachel!


12/19/2001
Our Seattle Christmas Tree

(Day 28)

Erin is starting to settle into a daily routine at the outpatient clinic. She visits the clinic each day for her daily blood draw, during which the clinicians take blood samples. The clinicians use these blood samples to monitor her nutritional status and medication levels. They then adjust her medication dosages and intervenous feeding levels accordingly, with some dosages being adjusted daily.

So far, Erin's daily clinic visits have been very short. Thus, it looks like she will have plenty of free time during which she can catch up on the school work she missed during the last six weeks. Erin continues to feel well. She felt so well today that she walked all six flights of stairs to get to our apartment at the Pete Gross House.


12/18/2001
Fred Hutchinson Cancer Research Center

(Day 27)

Erin continued her transition today to the Seattle Cancer Care Alliance outpatient clinic. The medical team at the SCCA and the Fred Hutchinson Cancer Research Center are monitoring closely Erin's vital signs on a daily basis and will continue to do so through Day 100. They will adjust her dosages if her vital signs fall outside of specified ranges or if her medication levels exceed certain thresholds. They have focused on her blood pressure levels the last two days--yesterday's blood pressure was a little high, but today's was fine.


12/17/2001
Dr. Sanders

(Day 26)

Erin returned to the Seattle Cancer Care Alliance outpatient clinic today. There, she was examined by Dr. Sanders, the founder of the Fred Hutchinson pediatric program. The nurses at the outpatient clinic noted the lower-than-normal levels of medication Erin took while in the hospital and remarked how well she was doing so far.

The clinic took several blood samples to monitor Erin's blood count and medication levels. For the next ten weeks or so, the clinic will be watching closely for signs of "acute graft versus host" disease. Another key for the next ten weeks will be to avoid infections while Erin is on medicines that suppress her immune system.

Christy and Erin decorated the apartment today by hanging stockings and putting up the Christmas tree that our Kansas City neighbor, Ann Rueb, sent. They are also preparing for the invasion by the "Kansas City Wilsons" on Friday.


12/16/2001

(Day 25)

Dr. Andrews walked into Erin's room today said that he "just couldn't find any more reasons to keep her." Thus, Erin passed a milestone of sorts today by walking out of the hospital on her own two feet.

The greatest challenge of the day was working through the Seattle Seahawks football game traffic at nearby Husky stadium. After navigating the Seahawks jam, Erin accompanied Christy into the grocery store to pick food items that might be appealing. Erin was pleased to discover upon her return to the Pete Gross House that the TV cable reception at the apartment was better upon her return than when she left.

Although we are glad to be out of the hospital, we will miss the friends we made at the BMT unit at Children’s Hospital and Regional Medical Center. We appreciate the compassionate and attentive care Erin received at CHRMC.


12/15/2001

(Day 24)

Today has been yet another uneventful day. Erin has expanded her diet to include rice cakes and went another day without any nausea. Everything is on schedule for Erin to be discharged tomorrow.

In anticipation of tomorrow's discharge, Christy has been undergoing "primary caregiver" training. This training will permit Christy to perform several caregiver tasks that Erin's nurses have performed during Erin's hospital stay. These tasks include administering Erin's intravenous feeding system, changing the dressing around Erin's central catheter line, and administering all of the medications that Erin will continue to take after discharge.


12/14/2001

(Day23)

Today was a good and uneventful day. Erin was able to eat a little bit today (a bowl of Kix cereal) without becoming nauseated. Dr. Andrews came in and talked to Erin about appropriate foods while she is on steroids. She basically will be on a diet of liquids and bland foods until we know that her stomach has recovered. We are looking forward to Erin's discharge on Sunday.


12/13/2001

(Day 22)

Erin's wish of yesterday came true in that she is now going to be discharged from the hospital on Sunday, rather than today. She had a lot of nausea last night. Thus, the doctors decided to wait a few more days so that the nausea situation could get more under control.

Erin's white blood cell/ANC count increased to 2850 today. Most of this elevation is due to the steroid she is taking to control her graft versus host disease. Her platelet and red blood cell counts, however, are also rising nicely. This means that her new stem cells are engrafting and producing new blood cells as intended.


12/12/2001
Erin with nurses Shauna and Amy

(Day 21)

We received Erin's biopsy pathology report today. As expected, it indicates that Erin has a mild case of graft versus host disease in her stomach. She began taking a steroid today called Prednisone to treat the "GVHD." She should be on this steroid for four to six weeks.

Erin probably will be discharged from the hospital tomorrow. She must be discharged either on Thursday or Sunday so that she can visit the outpatient clinic the day following discharge. She actually prefers a Sunday discharge because the hospital has a better TV cable connection than the apartment. As Erin says, "Watching TV, that's what I do!"


12/11/2001
Dr. Andrews

(Day 20)

Erin's white blood cell/ANC counts skyrocketed again today. This time to 1008. In addition, her platelet counts are rising without the aid of a transfusion. We hope to receive tonight the pathology report from yesterday's biopsy.

Erin met Dr. Andrews today, who will serve as her attending physician through the remainder of her hospital stay. We will see Dr. Sievers again in January when he is serving as the attending pediatric physician at the Seattle Cancer Care Alliance outpatient clinic.

Erin has not had nausea problems today and was able to keep down some food. She had three apple slices and some macaroni and cheese (although she said the macaroni wasn't very good). In anticipation of Erin's discharge, the medical team is working to move her gradually from IV medications to oral medicines and Christy has been working to sanitize the apartment.


12/10/2001

(Day 19)

Erin underwent her biopsy procedure today. Everything went well and she is now recovering. We do not have the biopsy results yet and do not know when we will get them. We hope to get them tomorrow, but may have to wait a couple of days. Erin suffered another bout of nausea this morning, so we will be glad to get the results and thus know what course of action to take.

Erin received a surprise from her donor today. It was a "groovy girls" doll wearing a T-shirt with the word "Moxie" printed on it. We are sending the donor a small gift along with our family's annual Christmas letter (with the names blacked out, of course).


12/9/2001

(Day 18)

Erin's white blood cell/ANC counts leveled off at 640 today, but other aspects of today's counts indicate that there will be another big increase soon. The nausea has not been a problem today—Erin was able to eat and keep down some crackers and macaroni and cheese. Her diarrhea persists but seems better today.

Erin's biopsy is set for tomorrow. After grilling Dr. Sievers about the procedure she reluctantly consented. Once the nausea and diarrhea issues are under control, Erin will be discharged from the hospital—probably some time this week. Upon discharge, she will continue her treatment in Seattle on an outpatient basis through at least Day 100, meaning that if all goes well she could return home to Kansas City in early March.


12/8/2001

(Day 17)

Erin's white blood cell/ANC counts skyrocketed again today to 645 (Shauna, Erin's nurse on Transplant Day, won the final pool). Erin's main problem now is nausea and diarrhea, which limits her ability to eat solid foods and take oral medication. Again, these problems are common and expected and likely are symptoms of graft versus host disease. In fact, these symptoms are viewed favorably in many ways because they indicate that Erin's new white blood cells are searching for and killing any leukemia cells that may have survived the onslaught of radiation and chemotherapy.


12/7/2001

(Day 16)

Erin's white blood cell/ANC counts skyrocketed today to 423 (Bret won the pool again today and pulled into a tie with Erin). Her red blood cell counts were low, so she underwent a blood transfusion today to replenish her red blood cell counts. We expect another large ANC increase tomorrow based on other aspects of today's blood counts. Erin was able to keep some crackers down last night. The doctors believe, however, that graft versus host disease has settled into her stomach. They will perform a confirmatory biopsy on Monday. According to the doctors, this is very common and readily treatable. They noted that she has none of the other common "GVHD" symptoms. She looks great and is doing fabulously. If things continue to go well, she might even check out of the hospital next week.


12/6/2001

(Day 15)

Erin's counts increased today, but at a slower rate. Her white blood cell/ANC counts increased to 228 from yesterday's 204 (Erin won the pool again). We believe that the lower rate of increase is probably due to the chemotherapy she had a few days ago and that the white blood cell recovery will accelerate in the next day or two.

Erin's main problem right now is nausea. Every time she tries to eat solid foods she is unable to keep them down. The doctors indicated that if the nausea persists, they will perform a biopsy of Erin's esophagus to see if the nausea is due to graft versus host disease. If so, they will give her medication; otherwise, they will let the nausea run its course.

The specter of this procedure has brought out Erin's rebellious side. Her reaction has been "not a chance!" and "their hypothesis is wrong!" She also issued a warning: "They haven't seen the worst of me yet!" Our friends at Children's Mercy Hospital back in Kansas City have seen this side of Erin before—particularly when it comes to bone marrow aspirates and spinal taps!


12/5/2001

(Day 14)

Erin's white blood cell/ANC counts increased to 204 today (one of Erin's nurses, Amy, won the pool today). Erin slept most of the day today and, except for two bouts of nausea, has felt well today. She is no longer on pain medication. She still, however, takes antibiotics to prevent various potential infections and other medications to control "graft versus host disease" side effects that would occur if she engrafts too quickly.


12/4/2001
Erin during engraftment

(Day 13)

Erin's blood counts continue to increase. Her white blood cell/ANC count more than doubled today to 160 (Bret won today's pool with a prediction of 158). Her mouth sores have diminished to the point that she can take small sips of liquid and munch on crackers. She feels so good that she permitted Christy to take a picture for the website as a way of saying hello to every one. The doctors mentioned the word "discharge" today for the first time, although we are probably about a week away. The key to discharge will be Erin's ability to eat a sufficient amount of solid food.


12/3/2001

(Day 12)

Engraftment continues, as Erin's white blood cell/ANC counts continue to rise. Her ANC today was 70, compared to 21 yesterday and 0 the day before. In addition, her mouth sores are going away and becoming less painful as her blood counts increase. Another pleasant surprise is that there have not yet been any significant "graft versus host disease" symptoms, such as skin rashes and tingling of the hands and feet. The medical team continues to be very pleased with Erin's progress.

In addition to the good engraftment news, Erin is now out of isolation—she may now take walks and exercise throughout the BMT unit. The activity and visitors in her room have increased accordingly, making her hospital stay less tedious for both her and Christy.

Erin's biggest challenge right now seems to be the emotional toll caused by the cumulative effect of the radiation, chemotherapy, nausea and mouth sores. She has had a few bouts of anxiety and anger over the last few days. This certainly is understandable—she has every right to be tired and angry about the past three weeks of confinement and discomfort.


12/2/2001

(Day 11)

It is official: Engraftment has begun (see the description of the Engraftment and Early Recovery Phase in the Fred Hutchinson Transplant Process Page). Erin's new stem cells are now producing new white blood cells. Erin also passed another milestone today by undergoing her final chemotherapy treatment.

In addition to new white blood cell production, another sign of engraftment is that Erin is starting to feel better. Her mouth is starting to look better, and her facial swelling has gone down. All the nurses have remarked how well she has been doing, particularly noting her lack of fevers. Erin spent most of the day sleeping today, primarily due to the anti-nausea medicines she is taking. The primary entertainment of the day was the daily pool among the nurses, parents and Erin regarding Erin's white blood cell/"ANC" counts. Erin won the first pool today by predicting that her ANC would be 20 (her actual ANC was 21, with the predictions ranging from 10 to 138).


12/1/2001

(Day 10)

No noticeable change in white blood cell counts today, although Erin's nurse for the day (Allison) also insists that engraftment is beginning. We expect Erin's counts to increase noticeably any day now. Erin's nasal cultures and blood cultures of a few days ago still show no signs of any viral infection.

For the first time since she began radiation treatments over two weeks ago, Erin spent most of the afternoon playing computer games on her laptop computer—a sign that she is perhaps beginning to feel better. Christy returned from Kansas City today, and Bret will head back to Kansas City tomorrow. He will return on December 21, along with Rachel and Emily for the Holidays. It will be the first time that Rachel and Emily will have seen Erin in almost two months.

© 2002. Bret and Christy Wilson.