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Dr. Woods

Erin returned to Children's Mercy Hospital today for a clinic appointment with Dr. Woods. It was really good to see Dr. Woods, Dr. Lynne, Cathy Burks, Rose Highberger and the rest of our "Children's Mercy Family." Dr. Woods has put together a chemotherapy regimen designed to get Erin back into remission. The regimen is similar to the regimen Erin underwent last summer prior to her transplant. Erin will check in to Children's Mercy on an inpatient basis tomorrow to begin her chemotherapy. This round of treatment will require that she remain in the hospital for six days.

Erin woke up early today. The first item on her agenda was to visit some of her teachers at Santa Fe Trail this morning before the students arrived at school. She also enjoyed receiving some visitors today at home.

We wish Bob Cleary and Chris Sorensen safe travels today. They left for Seattle today to pick up our van and bring it back to Kansas City for us. We are particularly grateful for this help so that Bret could stay in Kansas City this weekend during Erin's hospital stay.


Erin is now back home in Kansas City. She was met at the airport by Emily and Grandmother and Granddad Brenton and the Morgan family. She then returned home to a house decorated inside and out with well wishes and expressions of love. In addition, a small group of Rachel's friends from the neighborhood and St. Teresa's Academy were on hand to welcome Erin home.

Although we did not return home under the circumstances we wanted, it is still good to get home all the same. We are finally all together after four long and grueling months. Erin starts the next leg of her journey tomorrow with a clinic visit with Dr. Woods.


Our meeting with Dr. Sanders today was positive in that Dr. Sanders and Dr. Woods (Erin's oncologist in Kansas City) have come up with a treatment plan. Erin will return to Kansas City tomorrow and start a chemotherapy regimen designed to get her back in remission. If she is able to stay in remission for a year, the physicians would then consider her for a "mini-transplant." Mini-transplants involve less radiation than full transplants but still introduce a new immunity system to fight any remaining leukemia.

More importantly, Erin has decided that she is not ready to give up--she wants to continue the fight. In fact, she asked last night why she couldn't try another round of chemotherapy and perhaps another transplant, which is basically what the doctors proposed today.

We are realistic in that we know the odds are long. Erin has a very aggressive form of leukemia that has proved very difficult to defeat. In many ways she has done well just to keep the fight going for almost eight years. Yet we also know that others have suffered a relapse after transplant and have then succeeded with a treatment plan similar to Erin's. Thus, there still is hope. We will continue the fight.

We look forward to Erin's return home tomorrow.


Erin relapsed today. We do not know where we will go from here. Bret is flying up to Seattle tomorrow morning. We will meet with Dr. Sanders to determine our options.


Erin had a good clinic visit today, as Dr. Sanders has a positive outlook on Erin's treatment plan. Erin will now have two clinic visits per week (rather than the previous one-per-week frequency) so that the clinicians can monitor her graft-versus-host disease status more closely.

Erin's weight still is going up. She is now about 30 pounds above her normal weight even though her appetite has been back to normal recently. In addition, she is experiencing swollen feet. The clinicians think this due in part to the blood pressure medication she is taking. We will now decrease her blood pressure dosages as she tapers her anti-GVHD medication. Thus, we expect her weight to begin decreasing soon.

Erin and Christy had lunch with Mrs. Brendler (Erin's first grade teacher) today. They look forward to seeing Aunt Myra on Sunday, who is in Seattle visiting friends for the weekend.

Dr. Sanders

Erin's cyclosporine medication taper continues. We will now will start watching for symptoms of GVHD such as nausea, vomiting and skin rash. Christy joked that she wants Erin to let out a cheer if she has any diarrhea or vomiting. Christy also warned Bret that she will call him at any time, day or night, to let him know if any vomiting or diarrhea has actually begun. We really don't yet know, however, when to expect these symptoms, or if they will occur at all. That will be one of the questions we have tomorrow for Dr. Sanders during Erin's clinic visit.

Now that Erin will be staying in Seattle for the time being, we are making new travel plans. Bret will probably head back to Seattle on March 8 and Christy will return to Kansas City on March 9. Christy will return a week later with Emily and Rachel, who will stay in Seattle for a few days during Spring Break and then return to Kansas City with Bret.


We have now started the process of reducing Erin's anti-graft-vs-host medication. She will taper her Cyclosporin anti-GVHD dosages to zero by March 1. In about four weeks, the clinicians will then conduct another round of tests similar to the Day 80 workup to gauge the effect of the Cyclosporine and steriod tapers.

In some ways, yesterday's test results make sense in that Erin has experienced minimal GVHD symptoms so far. Thus, there probably hasn't been enough GVHD to finish off her leukemia, making it necessary to unleash more GVHD to finish the job.

Erin is in fairly decent spirits—going back and forth right now. She is scared but understands what the doctors are doing. Her comments switch back and forth from "So basically, I just did do too well (referring to GVHD), right ?" to "You know this isn't going to work." Christy told her that she did a great job of willing away the GVHD and that she now just has to will it to unleash on the leukemia cells. We will be working to help Erin replenish her fighting spirit in the coming days and weeks.


(Day 90)

We received disappointing news today. Erin's Day 80 workup testing discovered a very small amount of leukemia cells in her bone marrow. The amount is so small that she still is considered to be in remission, and it probably would have not been discovered except for the state-of-the-art, extra-sensitive lab equipment at the Fred Hutchinson Cancer Research Center. We have decided that Erin will stay in Seattle for the time being so that the doctors can adjust her treatment in order to attempt to kill the remaining leukemia cells. Thus, Erin will not come home on Monday—we do not know when she will come home at this point.

When Dr. Sanders asked Erin if she had any questions, Erin's response was, "I am dying, aren't I?" Dr. Sanders quickly replied, "No, you are not dying!" She went on to explain that some amount of graft vs. host disease is necessary to deliver the "knock-out punch." The doctors will now reduce Erin's anti-graft vs. host disease medication to give the donor's stem cells greater ability to attack the remaining leukemia cells.

We are, of course, disappointed with today's setback. Yet, we will continue to do everything in our power to help Erin prevail in her fight against this dreadful enemy.

Dr. Sanders

(Day 89)

Erin did a lot of walking today, partly because the Pete Gross House shuttle service was off for the holiday and partly to get exercise. She is now able to walk farther distances without back pain. In addition, Erin's lip improved alot today, and is no longer swollen.

Tomorrow is a big day for two reasons. First, Erin finishes her steroid taper. But more importantly, we will have a conference with Dr. Sanders to go over the results of Erin's Day 80 workup testing. This will tell us whether Erin can come home on the 25th and whether she will have to remain on steroids for the next year.


(Day 88)

Erin and Christy spent the day hanging around the Pete Gross House and grocery shopping for the evening meal. This week should be busy from a clinical standpoint, with a blood draw on Monday, Erin's Day 80 work-up test results conference on Tuesday, long-term care and transition training class for Christy on Wednesday and a blood draw, dietitian appointment and clinic appointment on Friday. In addition, Erin will finish her steroid taper on Tuesday.


(Day 87)

Today was an unusual weekend day in that Erin actually had an appointment with clinicians at the Seattle Cancer Care Alliance to cover transition issues regarding her return home. The clinic visit went well. Erin is still on schedule to come home on the 25th, although her return still is subject to her Day 80 workup testing results. We will receive those results on Tuesday.

Erin and Christy spent most of the day today watching the Olympics on television. One advantage Seattle has is that Canadian television network coverage of the Olympics is available in Seattle, allowing Erin and Christy the opportunity to watch the Olympics from two different network perspectives.


(Day 86)

Today was a beautiful sunny day in Seattle. Erin and Christy took the opportunity to enjoy the sunshine at Gasworks Park, where they took in a different view of Lake Union. All of Seattle now seems to be catching spring fever, judging by the number of sailboats on Lake Union today. Christy and Erin packed picnic lunches, but ended up eating their egg salad sandwiches in the van due to the wind and wet ground.

Erin is feeling better, although her lip still is swollen from Tuesday's skin biopsy. She had fun reading the huge box of hand-made valentines that she received today from Queen of the Holy Rosary School.

Space Needle at Dusk

(Day 85)

Erin is feeling better today, although her mouth is still sore from Tuesday's skin biopsy. She is now drinking from a straw and eating with less difficulty. Erin's only clinical activity was a visit to the foot doctor for another ingrown toenail. The doctor placed her on another antibiotic as a precautionary measure.

Erin's teacher, Anna, is leaving to go to the Winter Olympics today and will not return until after Erin returns home. Thus, today was Erin's last day at the Hutch School. Erin and Christy finished the day by watching a beautiful Seattle sunset. Christy was able to catch the moment in the accompanying picture. As Bret's friend Tom Schoenfeld noted, if Christy keeps this up she may end up getting a job with the Seattle Visitors Bureau!


(Day 84)

Erin spent the day recovering from yesterday's "Day 80" workup testing. She still is sore from all of yesterday's procedures. Her mouth, in particular, is very sore--she has a swollen lip, making it difficult for her to eat. Erin did not go to school today, opting to rest instead. We are looking forward to next Tuesday, when we find out the results of the Day 80 testing and whether Erin will be coming home for sure on the 25th.


(Day 83)

Today was an extremely busy day from a clinical standpoint, with a bone marrow biopsy, two skin biopsies, a spinal tap and a clinic appointment. Erin underwent skin biopsies inside her lip and on her arm. She was in quite a bit of pain after the skin biopsies and now has two stitches in her lip. She did not expect the skin biopsies to be so painful and was very angry after the procedure. Several tears were shed after the procedure. Thus, we at least know that GVHD has not impaired her tear duct functionality—a common GVHD symptom.

Erin had another encouraging weekly clinic visit today. She still has not experienced any significant GVHD problems, and the clinicians continue to be surprised by the absence of major GVHD symptoms this far into her steroid taper. Moreover, her platelet levels are recovering slowly but surely without any transfusions or other form of stimulus. Despite these encouraging trends, we will not know Erin's true GVHD status until we receive the results of today's testing. We should get those results one week from today.

Pudget Sound Sunrays

(Day 82)

Erin started the day with blood draws and school. After school, Christy and Erin went to the Space Needle. There, they had lunch together while admiring the panoramic view of the Seattle skyline. They then spent the rest of the day at home, resting for Erin's big day of workup testing tomorrow.

While at the Space Needle, Christy was able to photograph some of the stunning views. Here are some of the views that Erin and Christy enjoyed from the Space Needle.

Downtown Seattle
Lake Union with Space Needle Shadow


(Day 81)

Erin and Christy spent a leisurely morning admiring a view of the local mountains and also of the sailboats on nearby Lake Union. Before the rain and clouds moved in they went to Pike Place Market and purchased some souvenirs of Seattle. Now that going home is starting to realistically come into sight, we are anxious to make sure that we visit some of our favorite places, hopefully for one last time.

Erin will complete her "Day 80" workup testing on Tuesday. She will undergo a bone marrow biopsy, a skin biopsy and also a spinal tap. The bone marrow biopsy will assess her disease status, with the goal being a continued disease-free state. This biopsy will also determine how effectively the donor cells are working in Erin's body. The second biopsy, the skin biopsy, will help determine the level of chronic graft vs. host disease that Erin may possibly experience. The spinal tap will be performed in order to administer the last dose of chemotherapy into Erin's spinal fluid attempting to kill any leukemia cells that may have escaped to her spinal fluid during the conditioning phase radiation and chemotherapy. The clinicians will present the results of this flurry of testing during Erin's anticipated final clinic visit, just before she flies home, if all goes well, on the 25th.


(Day 80)

Christy is now back in Seattle for the "home stretch." As is typical for weekend days, there was no clinical activity. Erin and Christy went to University Village for a shopping run, exercise, and fresh air. After being away for a week, Christy noted that Erin's appearance is starting to change for the better--her hair has now grown back to "crew cut" length, and it looks like she may be beginning to slim down a little. More importantly, Erin seems to feel a little better as well, as she can now walk longer distances without back pain.

Eddie--the Pete Gross House Shuttle Driver

(Day 79)

Christy has now returned to Seattle. She will stay in Seattle for the remainder of Erin's stay. She will get up at 4:00 tomorrow morning to take Bret to the airport for an early flight back to Kansas City. Bret will return to Seattle on February 21 to take the van and the Seattle household items back to Kansas City. We have now set Erin's return date for February 25. We opted for the later of the two potential return dates to make sure that there was sufficient time for a thorough discharge workup and a smooth transition home.

Erin and Bret spent Bret's last day in Seattle by taking the Pete Gross House shuttle to Capitol Hill for pizza and a grocery run. The shuttle runs patients back and forth between the Pete Gross House and the Seattle Cancer Care Alliance outpatient clinic, making 27 20-minute round trips each day. It also takes PGH residents on grocery runs to Capitol Hill twice a day. Eddie, the PHG shuttle driver, drops residents off at Capitol Hill grocery stores and returns to pick them up one hour later. Eddie is a favorite of the PGH residents with his caring and easygoing manner.

Erin is beginning to prepare herself for her transition home. Even though she will be home, things will be much different than before. We will need to take extra precautions to avoid infections. In particular, we will need to limit household visitors, and Erin will have to avoid activities that involve exposure to bacteria. Erin doesn't mind some of the changes. As she noted jokingly, "Now Rachel can't get mad at me for not doing the dishes!"


(Day 78)

Today was a relatively slow clinical day in Seattle. The only clinical activity was Erin's semi-weekly blood draw. The flu bug in Seattle, particularly at the Pete Gross House, continues to be a problem. Thus, Erin's Tamiflu anti-influenza course has been extended for another ten days. Basically all of the patients living at the Pete Gross House now are on Tamiflu. Many of the patients we talked to have noted the same phenomenon that Erin experienced—if you don't take Tamiflu with food, it will make you feel like you have the flu.

The transition activity has picked up in Kansas City, as Emily bravely underwent her flu shot in anticipation of Erin's return. In addition, Children's Mercy Hospital confirmed today that Dr. Gilman will oversee Erin's care upon her return to Kansas City. Dr. Gilman is the head of CMH's bone marrow transplant group and a graft vs. host disease specialist. It looks as if Dr. Gilman can see Erin on either February 22 or February 26. Thus, Erin's return still is tentatively set for either February 21 or February 25.


(Day 77)

Erin's discharge testing continued today, with a bone density scan and other clinical testing. Erin will now take a break from discharge testing until next Tuesday, when she undergoes her "Day 80 Workup" bone marrow aspirate and spinal tap. In addition to her clinical activity, Erin went to school and exercised by walking the Pete Gross House stairs and putting in 15 minutes on the exercise bike. She and Dad finished the day by watching her favorite television programs—Candid Camera and an all-new episode of Diagnosis Murder.


(Day 76)

Things definitely are in discharge mode now. Erin underwent a dental examination and pulmonary testing today to determine her fitness for discharge from Seattle. She also underwent a physical examination during today's weekly clinic appointment. All of her tests went extremely well. Moreover, she still has not exhibited any significant GVHD symptoms. One of the nurses referred to Erin as a "rare bird," noting that very few unrelated donor patients make it this far into a steroid taper without significant GVHD flares.

Things went so well today that the doctors now are making specific plans for Erin's discharge, including targeting a specific discharge date. They have now set either February 21 or February 26 as Erin's tentative discharge date. This is a full five or ten days earlier than originally planned. The key to Erin's actual return date will be when her physicians in Kansas City are available to see her. The Seattle clinicians want Erin to see her Kansas City doctors the day following her return.

The exciting news regarding Erin's discharge has created a flurry of new activity. We will spend the next two to three weeks getting ready for Erin's return. That means flu shots for Rachel and Emily, sterilizing our house, making travel arrangements, and moving our Seattle household back to Kansas City.


(Day 75)

Erin spent a fitful night last night, waking up at 4:00 in the morning with stomach and nausea problems. She was finally able to get back to sleep about 5:30 after taking some benadryl to get her nausea under control. Mom and Dad feared initially that this might have been a GVHD flair up. Erin insisted, however, that it was due to taking her Tamiflu anti-influenza medication on an empty stomach. Erin did well today with no more nausea, so she probably is right—it probably was just a Tamiflu side effect.

Erin was her typical stoic self last night, never complaining and being more concerned about others than herself. Her big concern last night was that Dad got up to help her. Dad had to assure her that he didn't mind getting up to help her and that the very reason for his being with her in Seattle was to help her.

Erin's steroid dosage was reduced again today. This time to 12.5 milligrams per day. Her original daily dosage was 120 milligrams per day, so she is getting near the end of her taper. She is scheduled to stay at her current dosage through February 8. Her dosages will then fluctuate daily until February 20, when she is tentatively scheduled to discontinue her current steroid treatment.

Tomorrow will be another busy clinical day, with a dental consultation, a pulmonary function test and a clinic appointment. The clinical activity is beginning to pick up in preparation for Erin's return to Kansas City.


(Day 74)

Erin and Dad spent the entire day together Sunday in Seattle. After going for a walk at Green Lake Park, they then did some more grocery shopping before returning home to watch the Superbowl. Having been apart for a number of weeks now, it doesn't really matter how the time is spent. Simply being together is great.

This week promises to be a busy week from a clinical standpoint, as the clinicians will begin "Day 80" work up testing. This testing will determine (i) where Erin stands from a graft-versus-host disease standpoint, (ii) what kind of GVHD treatment she will likely undergo for the next ten months and (iii) whether she will be able to return home after Day 100.


(Day 73)

Today was a pleasant and quiet day in Seattle. Erin and Dad visited University Village this afternoon to exercise and enjoy the sunshine. Then they returned home where Erin rested and did some schoolwork. Dad has followed Mom's lead by making strawberry-banana fruit smoothies each day for Erin. The smoothies are a good way for Erin to willingly meet her daily minimum fluid intake of 73 ounces without parental intervention. They also provide a good source of protein. We eagerly anticipate Erin's return to Kansas City in about four weeks, provided that her on-going clinical course remains positive.


(Day 72)

Bret arrived in Seattle today to give Christy a break. Christy heads back to Kansas City tomorrow for a week and will return to Seattle on February 8. Bret, Christy and Erin spent a rare evening together by dining and shopping in Bellevue Square. Erin has already planned out an agenda for Bret for the coming week, with trips planned to Capital Hill and University Village.

The first thing that Bret noticed upon seeing Erin for the first time in four weeks is how much her steroids and anti-GVHD medications have altered her appearance. She hardly looks like the girl we spent the holidays with just a few weeks ago, let alone the girl who was playing softball last summer. We know, however, that her altered physical appearance is temporary and a price worth paying for what we hope and believe will be a lasting cure and a full and meaningful life.

© 2002. Bret and Christy Wilson.