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(Day 71)

The events of Seattle are calm in relation to all the weather-related events of Kansas City. The Kansas City Wilsons spent the night without electricity and tried to sleep to the sounds of tree branches falling to the ground. Bret has decided that he has had enough and will be flying to Seattle tomorrow to let Christy return to a cold and dark house on Saturday.

Erin continues to feel well. She had her routine weekly chest X-ray and blood tests today. No afternoon phone calls from the outpatient clinic mean that all was well with today's test results. Our biggest challenge (thankfully!) is getting Erin to drink enough fluids every day. She needs to drink 73 oz. per day to adequately protect her kidneys. Christy's number one responsibility is to nag. She is happy to turn nagging responsibilities over to Bret for a week. Erin looks forward to seeing her Daddy again tomorrow.


(Day 70)

Erin's steroid dosage has now been reduced to 25 milligrams per day (from 35 milligrams per day). Each step down in the taper schedule without a graft vs. host flare is a great relief. In addition, Erin was also started today on a ten-day course of an anti-influenza medication, Tamiflu. The clinicians placed Erin on this medication as a precautionary measure because a number of patients have come down with influenza A. The doctors are aggressively working to keep this infectious outbreak to a minimum. So far, Erin feels fine and is exhibiting no signs of the flu.

Erin and Christy also today had the opportunity to spend a leisurely morning lounging around the Pete Gross House. Then, after Erin attended school, they together took the shuttle up to Capitol Hill. After a pleasant treat at Seattle's Best Coffee, they visited a local grocery store for a milk and bread run prior to returning home to their apartment for the rest of the day.


(Day 69)

Erin had her weekly clinic visit today. Overall, she continues to do quite well. Her platelet counts have stabilized at last week's levels, and she has not shown any other significant graft-versus-host disease symptoms. Thus, she will remain on her steroid taper schedule for now. In addition to the favorable GVHD news, Erin's weight has now stabilized. As her steroid taper continues, we might even begin to see her weight decrease.

Erin's only physical complaint is back pain when she walks or is on her feet. Dr. Sievers suspects that these backaches may be due to Erin's steroids, which may have caused some small stress fractures in her lower vertebrae. It is also possible that the back pain is due to the significant amount of weight Erin has gained (particularly in the stomach area) during her steroid treatment.

Erin's "Day 80" bone marrow aspirate, spinal tap and skin biopsy is now scheduled for next Thursday (which actually will be Day 78). Her "Day 80 workup" will determine in detail her GVHD status and secondarily what kind of treatments she will require during the next year.

We spoke to the physicians today about how to bring Erin home. They were not very keen on the idea of driving—they were concerned about Erin being in isolated areas far from medical help for significant periods of time. Thus, Erin will fly back to Kansas City.


(Day 68)

Erin and Christy woke up to something they had not seen in a few days—glorious sunshine! To celebrate, they walked home from clinic after Erin's blood draw. It looks like there will be no changes in Erin's medications because the clinic did not call after reviewing today's blood counts.

Today was an active day—Capital Hill shuttle run, school for Erin, and a University Village errand run. It was nice to have weather conducive to getting out and working off some energy. Even though the sun was most welcome, the highlight of the day was the Velvet Creme cheese popcorn shipment that arrived from Kansas City. YUM!!


(Day 67)

It snowed again in Seattle today. The snow did not stick in the city, but about an inch of snow coated the suburbs. Only about an inch of snow is necessary to paralyze the city because of the city's many steep hills and the population's relative inexperience in driving in the snow. Yet this very same paralyzing snow also creates displays of natural beauty.

In light of the weather, Erin and Christy stayed indoors spending a quiet day together at the Pete Gross House. Like many of the days over the past several weeks, the day remained uneventful and thus sometimes boring. Of course, inactivity from a clinical standpoint is good because this means that Erin is continuing to do well. No news, in some respects regarding the bone marrow transplant process, continues to be good news.


(Day 66)

Seattle was cold and dreary today. It actually snowed, and it is supposed to snow tomorrow as well. Seattleans are not used to snow, so it is a big event when it snows in Seattle. The city basically closes down if there is a couple of inches of snow. In light of the inclement weather Erin and Christy spent the day inside with Erin working out on the Pete Gross House exercise bike.

If every thing continues to go well, Erin could be leaving for Kansas City five weeks from today. We haven't yet decided whether she will fly back or ride back in the van. In anticipation of the trip back, we have begun shipping items from Seattle to Kansas City.


(Day 65)

Erin underwent her immune gamma globulin transfusion today. It was a long transfusion, taking four hours. It was so long, in fact, that the Seattle Cancer Care Alliance transfusion team brought Erin a chicken salad sandwich during the middle of the transfusion (Erin enjoyed the sandwich until she found an onion in the chicken salad). Erin reduced her steroid daily dosage again today to 35 milligrams. We continue to watch closely for more signs of graft versus host disease as she reduces her steroid dosages.


(Day 64)

Erin underwent her spinal tap today. The procedure went well and the preliminary results look good. Erin was a little sore after the procedure, but walked back to the Pete Gross House anyway. Her immune gamma globulin transfusion is scheduled for tomorrow. The transfusion will take four hours, so Erin will not have time for school tomorrow. It looks like Erin got a holiday from school this week after all!


(Day 63)

Today's clinic visit was a mixed bag. Erin's platelet counts have begun to decrease—a symptom of graft versus host disease. Yet Erin so far has not exhibited any other GVHD symptoms (such as diarrhea, skin rashes, lack of appetite or liver problems). Thus, she will continue her steroid taper schedule for now.

The presence of GVHD symptoms means that Erin likely will have to stay on steroids for about ten more months, albeit at dosages different from her current dosages. Fortunately, the new dosages should not generate the side effects that Erin now is enduring.

In addition to the platelet levels, Erin's "immune gamma globulin" levels are low. We really don't understand what this is other than that it has something to do with her immunity system's ability to protect against viruses. Erin will undergo a four-hour blood transfusion either on Monday or Friday to boost her "IG" counts to the appropriate levels.

Although we are a little disappointed with today's clinic results, these developments are common and usually occur during this stage of the transplant process. Dr. Seivers was quick to point out that this is nothing out of the ordinary and that Erin still is progressing right on schedule. Furthermore, only a very small percentage of unrelated donor transplant patients go without having to take steroids for the first year following transplant.

Finally, we received encouraging news on the hydration front. Erin's hydration levels are doing very well. She will discontinue her IV hydration in two or three more days.


(Day 62)

Today was a typical Seattle day, with a blood draw in the morning, an errand run to Capital Hill and school. Erin and Christy then topped off all that excitement with an afternoon nap. Erin had school today because of yesterday being a holiday (Erin normally has school scheduled on Monday, Wednesday, and Friday). She was thus quick to point out that she actually did not get a holiday from school. Tomorrow and Thursday promise to be busy clinical days, with a clinic appointment tomorrow and a spinal tap on Thursday.


(Day 61)

Today's biggest challenge was keeping occupied, as there was no clinical activity or school because of the holiday. Christy and Erin got out of the apartment and did some window shopping at University Village. Erin's appetite continues to decrease and her life seems to revolve less and less around food as her steroid dosages decrease. There still have been no significant graft-versus-host disease issues. Yet we still are coming off the "honeymoon period" for transplants and could thus see complications arise during the next six to eight weeks. We hope our good fortune continues, although we are preparing ourselves for potential bumps down the road. As Christy so aptly puts it, "Guarded optimism abounds here."


(Day 60)

As tomorrow is a holiday, Erin went to the clinic today for blood draw work. A "sunbreak" occurred about the time of Erin's clinic appointment, so Erin and Christy made the round trip on foot ("Sunbreaks" are such rare and noteworthy meteorlogical events in Seattle that they have their own name. In fact, meteorologists actually try to forecast them.). After being congratulated by Christy upon making the steep climb from the Pete Gross House to the clinic, Erin seized the opportunity to point out that she earned lunch out at the nearby Azteca Restaurant.

While in the clinic, Erin and Christy met a family from Kearney, Missouri. They just arrived last week and are in the pre-transplant work-up phase—a phase that Erin went through nearly three months ago. Seeing Erin on the "other side of transplant" served as a beacon of hope for them, just like how other transplant survivors (such as Stephanie Ungashick, a six-year unrelated transplant survivor in Kansas City) serve as inspirations to us.

Erin's daily steroid dosage was reduced once again today—this time from 60 milligrams to 47.5 milligrams. Her original dosage was 120 milligrams, so she now is well more than half way through her steroid taper. We will continue to watch closely for graft versus host disease flare ups over the next several weeks.


(Day 59)

Today was a typical weekend day with no clinical activity. The lack of clinical activity means, of course, that Erin continues to do very well and that there still have been no signs of graft-versus-host disease problems. Erin took her 13 morning pills and 8 evening pills and drank seventy ounces of fluid today. She exercised by walking up and down six flights of stairs while getting today's mail. If things continue to go well, Erin could be leaving for Kansas City six weeks from today.


(Day 58)

There was no specific clinical activity today. Despite cold and dreary weather conditions, Erin and Christy were able to visit Seattle's Pike Street Market and the Seattle aquarium before returning home to rest. Both Christy and Erin believe that Erin's appetite is beginning to decrease. This probably is due to the taper of Erin's steroid dosages. If so, perhaps Erin's steroid-induced puffiness and weight problems will soon begin to diminish.


(Day 57)

Today was a busier than normal day from a clinical standpoint—Erin went to the clinic for a blood draw and then went to Children's Hospital for a chest x-ray. Afterwards, Christy and Erin stopped by Azteca Restaurant for lunch. It was the first time Erin had Mexican food since well before her transplant—another sign that her tastes are returning to normal. Erin continues to feel fine and has yet to show any significant graft vs. host disease symptoms.


(Day 56)

Today was a cold, dreary and relatively uneventful day in Seattle. For lunch, Christy and Erin devoured burgers together on Capital Hill (Capital Hill obviously has become very popular of late) and then settled in to a quiet afternoon at the Pete Gross House. Erin likes her new clothes. They make her feel better about her appearance, allowing her to joke that her steroids make her look a bit like a panda bear.

It may not be the new clothes that are making Erin feel better. It may be the advice she received from one of Christy's college friends, who pointed out that Christy had some scary looking mornings herself in college after a few late nights. She then reminded Erin that it is only temporary, noting how beautiful Christy is today!


(Day 55)

Today was a quiet day from a clinical standpoint. Christy and Erin took the Pete Gross House shuttle to the Capital Hill area, where Erin bought some crafts supplies. Upon their return Erin spent the rest of the afternoon working on her Algebra homework.

Perhaps the biggest news for the day is that Erin's steroid dosage was reduced to 60 milligrams today—half of her original dosage. This represents a key stage in tapering her steroid treatment because graft-versus-host disease problems are more likely to flare up once dosages are reduced to half of the original dosage. If flare ups occur in the next week or so, Erin would probably have to return to the original dosage and then taper the dosage over an even longer period. Thus, we will be watching for GVHD symptoms for the next couple of weeks with great anticipation.

Dr. Woolfrey

(Day 54)

Erin had a good day at the clinic today, as Dr. Woolfrey said that everything is going according to plan. In addition, the dietitian reduced Erin's daily IV fluid intake today by half to 250 milliliters. This means that she only has to be on IV hydration for two and a half hours per day. Erin's bacterial infection pretty much has run its course, although Erin will stay on antibiotics for about three more days just to play it safe.

Erin was down after looking at herself in the mirror this morning. The steroids really have taken their toll on her appearance—she is very puffy right now. We are encouraging her to eat half a sandwich to see if that satisfies her hunger pangs and trying to get her to exercise more throughout the day. We are also eliminating preprocessed foods from her diet. Erin cheered up later in the day when Christy took her shopping at Bellevue Square for some new clothes.

Christy and Erin saw the Gillilands at clinic today. Mrs. Gilliland is doing very well and gets to return to Kansas City on Thursday. We have several friends and acquaintances in common in Kansas City and look forward to crossing paths with them again once Erin returns home.

Erin has now settled into a routine at the Hutch School and appears to be enjoying it more than she at times lets on. She is a hard worker and does a good job of keeping up with her work. It is really heartening for Christy to tell Erin to have a good day at school and to let her go off to school on her own. As Christy points out so well, it is the only "12-year-old thing" that Erin does during the day.


(Day 53)

Today was another quiet day in Seattle. The big event of the day was Erin's discovery of a shop in University Village that makes Italian pasta dishes that you can take home and heat up. Another way to satisfy Erin's steroid-induced craving for Italian food! Perhaps Erin's recent food cravings means she should choose Italy for her post-transplant celebration trip. Mom and Dad certainly wouldn't mind. Ci piace Italia (we like Italy)!

Tomorrow should be an interesting day, with appointments with the dietitian and the clinic. We will be particularly interested in finding out if the bacterial infection issue has been put to rest.


(Day 52)

Erin and Christy spent a quiet day in Seattle today, with Erin working on a version of her Reflections composition ("I Hold In My Hand") to send to her donor. Erin continues to feel fine with no symptoms or other signs arising from her potential bacterial infection. In addition, her blood pressure appears to have stabilized after yesterday's adjustment to her blood pressure medication. If things continue to go well, Erin could be leaving for Kansas City seven weeks from today.


(Day 51)

As our neighbor Andy Rowe said today, "The good news is that nothing happened today." The only medical issue today was Erin's blood pressure. It was a little high, so the doctors increased her blood pressure medication accordingly. There still continues to be no problems from the bacterial infection front. In addition, Erin underwent her weekly chest x-ray today—everything was clear.

Today was a routine Friday from a non-medical standpoint. Erin went to school today, giving Christy a chance to sample a nearby taco joint. Tonight, Erin and Christy went to the Olive Garden again to satisfy Erin's steroid-induced craving for Italian food.


(Day 50)

Erin still is showing no symptoms of her bacterial infection. In fact, a second blood culture taken on Tuesday has yet to show evidence of bacterial infection. Thus, the bacterial infection problem may soon be behind us. Erin's daily steroid dosage was reduced 12.5 milligrams today to 72.5 milligrams (her original dosage was 120 milligrams). She will stay at that 72.5 milligram for five days and then reduce her dosage again if things continue to go well.

Erin underwent another spinal tap today. Like her Day 36 spinal tap, the purpose of this "tap" was to test her spinal fluid and administer chemotherapy to her central nervous system. The procedure went well—well enough that Erin accompanied Mom on another Capital Hill shuttle run where she consumed pizza and chocolate cake.


(Day 49)

Erin continues to feel fine and has yet to develop any symptoms from her bacterial infection. She returned to school today and worked with Anna, her teacher at the Hutch School. Erin now goes to school every Monday, Wednesday and Friday from 12:30 to 1:30. She also works with Mrs. Thoeni, her home school teacher in Kansas City who also happened to be her second grade teacher at Santa Fe Trail Elementary School.

While Erin was in school today Christy took the Pete Gross shuttle to Capital Hill, Seattle's old "hippie" area. Christy sipped a cup of coffee, then explored Capital Hill's restaurants and specialty boutiques. Each day the Pete Gross House shuttle takes Pete Gross residents to Capital Hill on a grocery run. Now that Erin is back at school, Christy is sure to be a "regular" on the Monday, Wednesday and Friday runs.

Erin's hair finally is starting to grow back—she now sports a "5 o'clock shadow" on her head. This is a particularly encouraging development because Erin has been sensitive about her appearance lately—while in public, she will withdraw to avoid being seen by children her own age. In addition to hair loss, she has had to endure weight gain, swollen facial features and facial hair. Most of these side effects should begin to subside in the next few months.


(Day 48)

Christy was paged by the clinic today with news that one of Erin's blood cultures from yesterday showed signs of a bacterial infection. Thus, Erin has been placed on antibiotic treatment. It is too early to tell exactly what kind of bacterial infection it is, but the clinicians suspect that it is an infection within Erin's central catheter line (the catheter through which the clinicians draw blood samples and administer IV treatments). These types of infections, while not to be taken lightly, are relatively common with transplant patients.

Erin has not yet shown any symptoms and feels fine. Thus, it is clear that the clinic caught the infection early. In light of the clinic's timely discovery and Erin's lack of symptoms, hospitalization is not necessary at this point. Erin feels so well that she was joking about how she met two of her friends today at the grocery store and invited them over for dinner. Her friends' names are Ben and Jerry (ice-cream).


(Day 47)

Dr. Sievers thanked Erin during her clinic visit for making his day boring. That means, of course, that Erin continues to do well. The clinicians actually broached for the first time today the idea of returning home. They noted that we now are about halfway there. If everything continues to go well, Erin will be able to leave for Kansas City on Day 101, approximately eight weeks from now.

Erin also had an encouraging day with the dietitian. Thanks to her increased oral fluid intake, her dietitian reduced her IV hydration today to 500 milliliters (mls) per day. This is down from yesterday's 1000 mls per day and the original 1250 mls per day. Thus, Erin is now on IV hydration for five hours per day, rather than the previous ten to thirteen hours per day.

Erin enjoyed having dinner today in Bellevue, Washington with Mrs. Brendler. She took a big step toward meeting today's hydration requirement by drinking a chocolate milkshake and a virgin strawberry daiquari, which constituted 32 of her required 60 daily ounces of oral fluids. Afterwards, Erin had fun during a shopping excursion at Bellevue Square.


(Day 46)

Any one who watched the Kansas City Chiefs/Seattle Seahawks football game on television today got a first-hand view of typical Seattle winter weather—cold, gray and rainy. In light of the weather, Christy and Erin spent the day indoors in the apartment. Erin and Christy managed to connect with Anne Brendler today. Mrs. Brendler was Erin's first grade teacher and now lives in the Seattle area. They plan to get together for dinner tomorrow evening.

Tomorrow will be an active clinic day, with appointments with the dietitian and Erin's attending physician. The dietitian appointment should be interesting because Erin is now drinking close to 60 ounces of fluid per day. We hope that she will be able to discontinue, or at least reduce significantly, her IV hydration tomorrow.


(Day 45)

Christy and Erin woke up this morning to the sounds of window cleaners cleaning the outside of their windows at the Pete Gross House. Other than that, nothing else out of the ordinary happened today. We have noted a new sign of Erin's recovery in that she is becoming more interested in a wider array of foods. She ate pork chops yesterday and steak today for the first time since her transplant. Christy has thus been cruising the Internet lately, looking for new recipes that might appeal to Erin.

Erin's steroid dosage decreased today to 85 milligrams per day, down from the original 120 milligrams per day. She will stay at this level for the next five days and then reduce her dosage again if no significant GVHD symptoms develop. We are really looking forward to getting her off of the steroids so that she doesn't have to deal with their nasty side effects.


(Day 44)

Mom now is back in Seattle, and Dad has returned to Kansas City after a two-week stay in Seattle. We have developed a bit of a "love/hate" relationship with Seattle. While it is a fabulous city with a lot of fun things to do and see, Seattle at times experiences heavy traffic and gloomy weather.

Erin is continuing with the engraftment process, which is very exciting. We are thankful that Erin has progressed as well as she has so far to date regarding the bone marrow transplant process. Sometimes our days seem a bit routine and mundane. Yet, "no news is good news."

Erin is now experiencing days when she has no clinical activity scheduled. We are encouraging Erin to take advantage of these sorts of days by getting out of the apartment. Today, for example, Erin went window shopping at University Village Center near the University of Washington.


(Day 43)

The clinicians examined Erin today for the first time in about a week. They were very pleased with what they saw, noting that Erin has only mild symptoms of graft-versus-host disease. In fact, she showed less symptoms today than a week ago even though she has reduced her daily steroid dosages by more than 20%.

Dr. Sievers reviewed with Erin the three things she needs to do to minimize GVHD complications: She needs to (i) take her medicines, (ii) keep away from direct sunlight by wearing protective clothing and sun screens and (iii) stay free from infections (even something as slight as the common cold). Dr. Sievers explained that if Erin were to catch something now, her new white blood cells would know that they have to attack something but would not yet know exactly what to attack. They would end up attacking, in addition to the infectious agent, Erin's own cells and tissues, thus triggering GVHD problems.

Erin also met with the dietitian today. She is making good progress with her hydration and is gradually reducing her required nightly IV hydration intake. Once she is able to drink 73 ounces of fluids per day, she will be taken off of IV hydration entirely. Erin did her part tonight by drinking two virgin strawberry daiquaris when Mom and Dad took her out to dinner!

Erin received a note from her donor today. We learned that her donor has been a teacher in addition to being a nurse. We enjoy trying to guess where her donor may be from. Right now, we think she may be from New York (perhaps Brooklyn). Her donor explained that she gave Erin the "Moxie" Groovy Girl doll last month because she thought Erin had a lot of moxie, noting that the term "moxie" is defined as "the ability to face difficulty with spirit and courage." Erin's donor clearly is on the mark.


(Day 42)

Today was a recreational day, as Erin did not have a clinic appointment or blood draw and school has not yet begun. Tomorrow, however, promises to be a busy medical day with a blood draw, chest x-ray, dietician appointment and clinic appointment. In addition, we will pick up Mom at the airport upon her return from Kansas City. Erin will resume school at the Hutch School on Monday.

We spent this afternoon driving around Seattle and enjoying the rare winter sunshine. One thing we have noticed is that the Seattleans do not let the rain keep them indoors. During our Seattle tour yesterday, we saw people in the parks jogging, flying kites and cooking out on campfires in the rain as if it were a sunny day. Erin has decided that she doesn't like Seattle's weather. She prefers Kansas City's snow to Seattle's winter dampness.


(Day 41)

Last night's fireworks display was sensational. We probably had one of the best views in the city as fireworks shot out in all directions from the Space Needle. Despite the sensational display, our neighbors at the Pete Gross House agreed that the price of admission (i.e., having to have a bone marrow transplant) was not worth it—we all preferred to be at home. Erin and Dad spent New Year's Day exploring Seattle and going out for a late lunch.

Erin has been doing so well that she does not have another clinic visit or blood draw until Thursday. She will have gone three days without a blood draw and six days without a clinic visit. Needless to say, we are glad that 2001 is behind us and we look forward to 2002 being a better year. Happy New Year!

© 2002. Bret and Christy Wilson.