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Friday, February 24, 2006 10:53 PM CST

Happy Winter! It snowed again in Seattle today! We can't be happier... we just came back from a ski trip in Canada where Bomber Sierra couldn't get enough of the jump trails...I guess she is practicing for the Olympics.

Sierra is practicing hard for her performance of her school's play "Honk!". She is "Fluff", a duckling. Her performances are Friday night at 7 pm and Saturday, April 1 at 1 pm. She is taking her "job" very seriously while singing, dancing and reviewing her lines. She basically has put everything else on hold.

We have had some exciting visitors lately. Cousin Jessica flew in from New York City and she stayed here over the weekend while going on job interviews...we DO hope she moves here. That would be nice! Also, we have had Cathie's friend from work stay with us for 2 weeks to attend a training. Tiffany has been great being here to play with, listen to (the good with the bad) the kids, and help us out. It does seem to take 3 parents to raise kids. We wish all these visitors would stay!

We don't have to go back to Children's for checkups until June...what a bittersweet milestone. I worry about not going in every three months, but they tell us to come back anytime. COH is still near and dear to our heart, so we are trying to help in larger ways through the Foundation and through the John L Scott Foundation...more about this in March!

Wishing you good health and happiness!
Love, Team Sierra

Sunday, November 13 (already)

Great news! Sierra's scans are ALL CLEAR!! YIPPY!! AND she got a part in the play--she was cast as "Fluff" in the play Honk. She is so excited, we told her to expect to be in the chorus the first year, but she was bound and determined to get a part. By gosh, she did. She couldn't be prouder of herself. One last bit of good news:she reached a milestone with the doctors: she only has to come back every 6 months now. (Of course, I will worry that is too long without a check up--they told me we could come back earlier if I needed that reassurance). The way things move along, before I know it it will be 6 months. My moment of gratefulness: last night we took the kids to dinner after Chris's 2 playoff games (and his touchdown!). I stopped and told Neal that it is so nice to have meal with the kids and how easy it is...18 mo. ago (and the year in treatment) it was touch and go and we would never know how Sierra would feel. There are kids and parents struggling with treatment right now. We can't forget them. I took Sierra back to the hospital floor (3rd) on Friday to show a friend what it looked like. We are coming up with ideas (decorations, presents/ crafts, magazines for parents)for Christmas for the inpatient unit and we will be delivering right after Thanksgiving. Sierra walked those halls and remembered that was her life for a while, it was gratifying to see her give the tour and feel proud of this experience. Being able to leave when we wanted was a blessing.

Have a great fall day.
Love, Team Sierra

Sunday: Oct. 23 (There are new pictures in the photo album as of October 29.)
Hello There! We moved at the end of August! We are sad to have moved from a wonderful community and town of friends, but we are making the transition well. The kids started an excellent K-8 School called the Madrona NonGraded School in Edmonds. (It is nongraded in that it is multi age, like Eagle Rock is). Going from 68 kids to 650 has been very daunting, but fun for the kids. There are all the new things that come with a bigger school. Actually, the middle school takes up over 150 of the kids. Also, Chris and Sierra love the fact that 50 of their peers are deaf or hard of hearing and these children are integrated in their classes and girl scout troop. Mr. A. used to teach at the school so there is the "Mr. A. Legacy" "Oh, we have heard of Mr. A" the teachers say.

Sierra is involved in soccer all week, which has been great for her. Chris has flag football during the week and weekend. They are both signing up for our local theatre class in November where they will write a play and act it out at the end of November. We have really enjoyed living a few blocks from the theatre. Sierra has a real audition next week for the Madrona Children's Theatre (grades 4-8) performance of "Honk" in the spring. She will sing and be interviewed, then do a choreographed number and be judged on it. I think I will be more nervous than her. Chris has signed on for Stage Crew. Both jobs will be huge commitment in the Spring, but the kids realize this and are pumped up for it.

Sierra has joined up with a Girl Scout troop through school. She has already gone camping and cleaned up the beach around here. She was called a veteran girl scout by the leader!

Both Chris and Sierra have made friends quickly. Chris had his new buddies over while Sierra was camping. It was fun to listen in on the gang of 6 11 year olds. They are all very nice boys. It is a testiment to the kind of school they go to. Like Eagle Rock, the families are involved in the school, and they have to apply to get in, so by nature the families are involved with the kids. We have really been blessed to have come from such a great community of families to another one.

Sierra continues to see her eye doctor (way too much) weekly or bi-weekly to follow up on inflammation. She had her bi focal put in her right eye glass lens and she sees so well. She goes in for her next scans on Veterans Day, keep her in your prayers, please!

Take Good Care,
Team Sierra

Tuesday, August 16

Sierra's surgery went very well. She mostly slept off the anasthesia and layed low for a day afterwards. She is seeing so much better, her vision is blurry but everyday it gets better! WHEW!She is out of the woods on this one. She has religiously (allowed us to) put drops in her eyes. She was even well enough to go to the Gorge on Saturday with the family and see Jack Johnson. Neal found us a perfect, secret spot all to ourselves up close. It was very exciting for us all.
We move next Thursday, so it is count down time.

Take good care,
Love, Team Sierra

August 9: Dear Friends! Don't tell me it is August already!! How did that happen? The kids are enjoying a delightful summer doing the things that children should be doing. Sierra spends 80f her daily waking hours with Abby, her friend from down the street. They have set up a Polly Pocket Town, puppet shows, taking care of babies and they swim all the time. They rotate houses for dinner (so far, Abby has better food). We are so blessed to enjoy life as normal as can be. When this normalcy gets stolen from you, then it is given back... it comes back in a different form, almost like a gift with a huge big, bright bow. And look at those smiles. Sierra will always celebrate 4th of July with newfound enthusiasm. She remembers the dreaded night in the hospital 2 years ago, pulling an IV pole around going around to the hospital windows trying to find the best view of far-off fireworks. Even though it was 2 years ago, she still remembers and will talk about how hard that was. Childrens is a great place for us to focus our attention on giving and helping esp. around the holidays--and not just the big ones, either.

Sierra and Chris kicked off the summer by going to Camp Goodtimes, sponsored by Amer. Cancer Society (for cancer kids and siblings). They, of coarse, had an awesome time. They will talk about this for another year (the crazy hair day,whipped creme fight, the cruise, food fights, swimming,cabin raids,etc. etc.) They continue to meet long time survivors and they aim their sights on being a counselor one day... good goals!

The kids have also participated in day camps as well. Sierra participated in Girl Scout Day Camp, while Chris was my assistant at work (with briefcase and laptop). They both have really enjoyed the sports camps at Monroe Boys and Girls Camp--first Golf Camp for 3 days, then a 5 day Adventure Camp--biking, hiking 8 miles (!), water slides, rock climbing,zoo trip,swimming and fishing from a boat and cooking it for lunch on the beach. Now is that perfect, or what?!

We just returned from a nice visit to Idaho for Neal's parents' 50 th wedding anniversary parties. One at the church in Wieser, where they live and one up in the mountains where they have their cabin (20 degrees cooler). My parents flew in to help celebrate. Everyone went on a good hike to a lake (where else do you go in Idaho on a hike?), stayed next to the Salmon River, had campfire, lots of family time at the cabin, a nice "formal" dinner/family pictures and a few day stay in Sun Valley biking and hitting our favorite bookstore, the Iconoclast The owner started with a few 100 books in a Seattle hole in the wall-and now he has experienced amazing success.

Now the big news. We are moving at the end of August. We bought a home in Edmonds, WA. We have been the luckiest buyers in the world. The sellers have been gratious enough to have us over several times and they have thrown 2 parties for us!

Since I started my real estate business a few months ago, I thought I would experience it myself (it is also an occupational hazard to have new listings at your fingertips daily). The home we are moving to is a dream home for us-we don't plan on moving for a long time. We feel very blessed. We sold our home in one day- we had an awesome realtor :)

We will sadly miss our little town of Duvall and all of our special friends and neighbors. This town and neighborhood was the perfect place for Chris and Sierra to experience their elementary years. We will not be too far away to visit. The kids have already started planning get togethers and we have figured out a route, and the half way point for drop off and pick ups.

One last thing before I forget--notice how it was far out of mind...that is a good thing: Sierra has an operation this Thursday, August 11 to remove her lens and get a new one in her eye (bec. of a new cataract that is causing poor vision. She will do fine, I know. She said "Don't worry, Mom, it is like I am going to day camp, and I will come out with a new eye, but no crafts!" She will have to stay in-active for 2 weeks (yikes). The other news is: her scans are coming up Friday, August 26. So please keep her in your thoughts. She asked the other day: "Mom, how long have I been on remission?" "Almost, 1 1/2 years and you are doing great!!" She also keeps track of how long off radiation she has been. Just breaks my heart that such a young person thinks about this, but to her, it is a badge of honor. I learn from her every day!

Well off to start the day. Have a great one.
Love, Team Sierra

Saturday, May 21,2005

Hi! This is Sierra typing.BIG NEWS Coach Paige won the award for Citizen of the year!!It was held in Carnation even though it was for Duvall. My teacher Mr.A was a nomonie too!! Same with Dianne Baker (the owner of the Quilt shop).Kenzie came too! She is my best friend!!!! My Dad's Birthday present was a bike!!! My Dad was so surprised!!!When he walked into the room he didn't even notice it!!!
I need to go!so bye!!


Saturday, May 14, 2005:
Sierra's 1 year scans are ALL CLEAR! We are so, so happy!! She is doing awesome...



Life has been SO normal I haven’t updated in so long. Sierra has hit a major milestone… she celebrated her 1 year anniversary of the finishing chemo.

My parents were just here for 5 days to celebrate with a trip down to the Oregon Coast and Mt. St. Helens. We were going to go to Sun Mountain Lodge…but it snowed again and the pass closed (I have been trying to take them there for 15 years). They will return in May to make the attempt over SR 20 again! The Oregon Coast was beautiful-they had never been. I had to show them the haystacks at Cannon Beach. Of course, we hit all the major museums and Lewis and Clark places of interest. We highly recommend the Columbia River Maritime Museum—very educational and exciting!! Chris was in his element running around in the cold rain at the shipwreck on the beach. Later that night Sierra wanted to check out the fine dining of Astoria—she thought she was a queen eating off of a glass plate shaped like a fish. The next day we drove down the coast and had to stop at Seaside to rent a surrey for Mom and Sierra and sand cycles for Chris, Dad and me. Later, Sierra came to try it out. What fun!! It rained, and then the sun came out and warmed us up. Along the coast we saw where Lewis and Clark made their winter camp (Fort Clatsop) and saw a whale on the beach (Cannon Beach). After that we were off to Mt. St. Helens after a stay in the Kelso Comfort Inn. That night we went to Red Lobster for the very first time—Chris tried lobster tail for the first time, and Dad tried crab for the first time. We enjoyed the visitor centers, soaking all the information and exciting movies. We headed up towards the mountain –but it was snowing! By hanging out down there, we actually avoided a huge hailstorm that hit the Seattle area. After arriving back in Duvall, we spent some time with Joyce and Sharon who Mom and Dad have made friends with over the years at the hotel in Monroe. They always have taken good care of them while they have come to visit. Joyce went through treatment at the same time Sierra did. So we were celebrating everyone’s good health.

4 weeks ago Sierra shot a commercial with the Mariner Moose. Look for her commercials and bus signs advertising the Purchase A Miracle in local grocery stores to raise money for Children’s Hospital. She also did a radio spot. Look for shelf tags coming to your grocery store shelves at the end of April. This campaign will go on for May and June, 2005 and 2006. Pretty cool! The link is:
http://www.seattlechildrens.org/home/about_childrens/news_archives/purchase_a_miracle_may_1_june_15.asp
http

radiolink: ://home.comcast.net/~tammie.conder/


right this minute she is away for 3 days with the Girl Scouts. She would be really happy now knowing that her favorite NASCAR driver, Kasey Kahne, just won the Nextel race in Richmond, VA. Why is this important, you ask? He is from Enumclaw, WA and he has come in 2nd so many times, and I think it is great that he won his first race in my home state of Virginia. Sierra will be so EXCITED when she gets home tomorrow. Enough NASCAR.



Sierra was in her school play, Flat Stanley. She was a burglar and was a great villain. She also just performed in the school choir concert last week. In 2 weeks Sierra will sing in the choir, and Chris will play his trombone in the band.

We are looking forward to summer fast approaching. We have lots of plans for summer camp, day camps, and 2 weeks in Idaho and camping in WA and ORE.

It's Neal's birthday and he is getting a very special birthday present thought up by the kids. We can't wait to tell you and show you pictures of his surprise.

I just wanted to say Thank You to all the people who are walking in the Cancer walks this time of year...Karen, Katie, Allison, Deanne, Stacey, Kim, and so many others...we really appreciate it. We will be walking the Survivor Lap next weekend in Northshore and the one in Monroe and as many as we can find.

Enjoy the great spring time!!
Love, Team Sierra

Friday, February 4, 2005 10:28 PM CST

Sierra's scans were all clear today. She has a clean bill of health. Her primary scans nurse (the one that does the i.v. and whom we are getting to know) "wrote" her a prescription to follow until the next scans: No chores, Stay up late, Watch TV as late as you want, Sleep in, No homework, Do what you want. With a nurse like that, she doesn't mind going in for the i.v.!! I do that nurse is on to something though, I did not feel a bit guilty letting the kids stay up last night until 11 pm while the kids designed Sierra's hair with mousse. The giggles were priceless.

New things: Sierra's hair is long and beautiful!! Sierra is feeling the wind in her hair. She walked home from the bus in the pouring rain so she could feel her hair get really wet. (We sure do take these feelings for granted!). She made her first real ponytails,too! Sierra has started drum lessons...so WATCH OUT! On her first lesson, the teacher said "SHE HAS TALENT! You have to keep her in lessons!" She has that rhythm from dance and hip-hop.

Sierra was Dolley Madison in the school "dress up like a historical person day". While she was planning for the costume that I made, Chris overheard her plans. He said "Sierra, are you going to carry around a picture of George Washington with you?" We said to Chris "She was James Madison's wife, not G. Washingtons, why would she have George's picture?" Both the kids looked at us and said "Duh!!" Then they went on to explain that that in 1812 the British had dinner at the White House, then proceeded to burn it down. Dolley Madison saved the only picture of GW from the burning White House. I think my cousin, Michael (who works with John Kerry and is our family presidential genius) would be quite proud of that story.

Sierra got a "gear bike" for Christmas from Santa. She is so excited about it. We went on a 16 mile family bike ride last weekend and we are going to Bellingham for a 2 day ride on the trails up there (since need a distraction from the depressing fact that we can't ski-no snow).

Thanks for checking with Sierra. We wish you happiness and great health this 2005. Her next scans are in April. That will be her 1 year Off Treatment mark. Yes, we will PARTY that night!!

Love, Team Sierra

Friday, December 24, 2004 0:03 AM CST

A very happy Christmas to you all!!! There are new photos on the Photo page.

'Tis the season to reflect on the year, contemplate the gifts we have in each of us and what we can in turn give to others. We tried focusing on extending an extra hand out this holiday season...the kids have felt generous. They are in such a place now to really look at the world and the human condition and be affected by it. Meeting the friendly homeless man, John, who is in the wheelchair (he had no legs)in Portland still impacts Chris's life. He still talks about him. We wonder how he is, where he is.

Today at the hospital, we were fortunate to be the messengers of the 120 colorful, fleece hats that Eagle Rock Families made (yes, made!). Mr. A designed the hats, families each brought 2 yards of fleece and then we cranked out 100 hats in 2 hours. AMAZING!!! Chris and Sierra and a school friend witnessed the joy that came into the kids eyes as they got their own present of a hat wrapped in a crisp bag with a beautifully colored label. Sierra gladly took Miranda around the chemo ward as if it was her "home". She searched for her nurse (SpongeBob) but she wasn't working today. Sierra took us down to the playroom (to show Miranda the pretend xray machine and the babies.) The playroom was filled with children. A few cancer kids, several on IV's and feeding tubes. I knew these kids would be here for the holidays. I told Dorothy,Miranda's mom, the good thing is that the kids that are here in the playroom feel well enough and have high enough counts to get out of bed. I asked the social worker how they were "on toys"--they said the kids will do very well. So many toys (and nice ones, at that) are donated during the holidays. That is more good news. One of my new years resolutions is to formalize a group or a guild to help the oncology unit by doing community service projects (like the hats) and raising money for needed supplies/needs.

I have witnessed the difference that a few children and their families can make in a short time, and there is more love out there to be harnessed for the good of more children.

We saw the Lemony Snicket Unfortunate Events movie today. It was entertaining--scary for young ones. Definately not upbeat...but had some funny parts. Good vs. evil plot. In the end the last lines give us this message: Although Unfortunate Events happen it can be the beginning of a new journey for all us. May we all take our journey a bit further into the world...

Love to all,
from Team Sierra

Nov. 24, 2004

Wednesday: Here it is the day before Thanksgiving, and pies are in the oven...and the kids are in the holiday spirit. I didn't mind rushing Christmas this year, with the lights going up the day after Halloween (not ours, but others). We spent last evening at the Olympic Fairmont Hotel enjoying the Christmas Tree Lighting. Children's decorated a tree in Sierra's honor and you, too, can go to the GALA auction this Saturday and bid thousands of dollars for it(!) One girl read Sierra's story (which Sierra wrote) and searched her out in the crowd to ask her questions and get to know her. What a great experience for all. Sierra also met the granddaughter of WA's former governor, Dan Evans, who is off treatment 5 years with- rhabdo. It is great to meet another candlelighter for us to look up to.

As we enter this holiday season we are so happy to feel blessed for all that we have, for our fantastic family and for our good health (now when I say that it is not off the cuff-I really mean it now). We are thinking of our friends who have new babies this year (our neighbors after 4 adopted children, had a baby boy, Steven) and Chip and Christy in Boston were blessed with a baby boy named Charlie (our Grandpa's name). There is so much to be thankful for.

We will be spending Thanksgiving here with just the 4 of us (we will wait and travel to the east coast over Christmas). It will be a quiet little celebration, where we can spend some quality time together, which will be nice. Neal even said that the whole family will be cooking with me tomorrow- can't wait.

My prayers are with several other families that we know who are battling cancer, and friends who are going through the holidays without loved ones this year. It will be especially hard for them, and my heart is heavy for them. Cancer can't take away your spirit or your memories.

Bless you in this season of joy. We hope you embrace it!

Love, Team Sierra


Friday, Oct. 22: Sierra's scans are all clear!! We are very happy. Sierra started her day off (other than turning in her homework) taking flowers to Neal's co worker who is running the Seattle Marathon in honor of Sierra. Then we spent the whole day at the hospital getting various tests done. I am trying to meld the naturapathic system and Children's Hospital system. You'd think I was trying to move a mountain, my gosh. We had to get there early to get labs (according to the naturapath's office) so the special lab could get the blood at noon. Long story short, I learned what needs to be done, and what doesn't need to be done. Anyway, thank goodness we have an understanding doctor who did not scold me for advocating for these labs, that when all was said and done were run at Children's. I will just ask for a T, B and whatever NK (natural killer)test they do next time. I learned there is a good reason Children's doesn't run advanced NK tests (she would be very sick with an inherited disease if her NK cells didn't actually work.) The doctor wasn't ready to send the advanced NK test to the only standardized lab that runs that test---which is in Cinncinatti,Ohio!! Boy, he could have really made me look like a dingbat, but he didn't-thank goodness he is a great person.

Happy Haunting! Love, Team Sierra

Oct. 14: Happy Fall. Sierra is doing great! Right this second she is modeling her new witch costume for her dad. She is taking on Halloween season with newfound excitement. She can't wait to get out there and get 2 years of Halloweens in! When she was trying it on in the store, she wore it with theatric excitement. It is a black with red sparkly (of course) spider webs, with a matching hat. You will see a picture closer to Halloween.

OK, so, I have been deliquent in writing. I promise to write at least the first of the month and after her scans...which happens to be next Friday, October 22. This will be the dreaded week where I get edgy, cranky and a bit depressed. Then midway through the week I wonder WHY? then I remember, "Oh, yeah, she has scans on Friday". A five year survivor told me that over time, I will only get worried on the day of the scans. Can't wait for that to come. Please say some prayers for Sierra, we would appreciate it.

While you are at it, I have another healing prayer request. My dad is doing well after having artery (heart)surgery last week. He was told 6 months ago about the surgery, so he was a very low priority, but he is glad things are fixed. He amazed the doctors and nurses because his heart is so strong. He was called a "rabbit" bec. he was in and out of the hospital in no time. They couldn't believe how well his recovery went. My sister flew home and helped get him settled. She was great at assessing the "set up" since she is an Occupational Therapist. It is hard to be out here and be so powerless. I know how it was for all of our family last year, when the miles kept us apart. That didn't keep the support, thoughts and prayers from coming, though. Dad is on a good strong road to recover. He is a good patient and has been sharing inside "medical" jokes with Sierra.

Sierra is having a great school year. She really enjoys writing and has developed new skills that always impress me. She prides herself in having a pad of paper with her schedule on it that she carries around in the morning checking off her "to do" list.

I have a funny Sierra story that will embarrass her when she gets older. She came to me last week and said her shoulders hurt and were sore. She said she had read in a book that one month before you get your period you get sore and crampy. "Did you know you can get your period between 8 and 13? So, Mom, in one month.....you know..."

A little update on the Sierra PR Company: Sierra spoke to a group of food vendors and buyers that sponsor the "Purchase A Miracle" campaign to benefit Children's Hospital. She did great! She won their hearts. She will be filming a commercial with the Mariners Moose in January. Her face will appear on bus advertisements and will be all over grocery stores for 2 months (May and June) in 2004 and 2005. We are happy to help out Children's Hospital. 2 days after this, Neal and I spoke at the Ned and Kayla Skinner Guild that my friend belongs to. The proceeds of that function benefitted the hospital as well.

The quilt that Sierra's class made for her as a surprise (for her Chemo Party last April) won first place in the Duvall Quilt Show. I am preparing a good photo of the quilt and framing it for each student in the class.


Thanks for checking on Sierra,
Love, Team Sierra

Sunday, Sept. 12

The first week of school was very fun for the kids. They are happy to get back into the swing of things and be with friends. Many people have given Sierra compliments on her new hair style and red glasses. We are riding and walking to school when we can. It is great to have her back to 110It is not a struggle in the morning to get her out the door. We are turning over a new leaf.

Other exciting news: Sierra was surprised by the Make A Wish Foundation first when they sent an anonymous cookie bouquet to her at school. Then around 4 pm. the MAW volunteer showed up and reintroduced herself and asked if she was doing anything that night. We told her we had plans to meet Dad at Target to buy underwear (that's what I told the kids we were on our way to do-so they wouldn't go play with friends). When asked if she could get out of that, Sierra looked at me for permission. Then she gave her the big news that she was going to the concert and go get dressed!! The screams, the shrills, the excitement (it is all on video)...Sierra was showered with movie star gifts including a sparkly pink boa,Hilary Duff stuff,etc. Sierra dressed in her HD shirt and a fancy skirt. When she was applying her HD lip gloss she looked out the window up the street and saw what seemed to be a parade, she shrugged it off. Then she said she saw "everyone that I know." They carried huge signs: We Love You Sierra!! Cancer is So Yesterday, So Yesterday (the last part is a HD song). WOW I was blown over by the parade of our friends--people from school, the neighborhood, "old" friends, new friends...the emotions of how much these people have supported us through the last 1 1/2 years just filled my heart. The love Sierra felt was immense! It took her a minute to see the limo. A friend reminded me that Sierra was so graceful, she came out and the first words (after the scream) was "Thank You Everyone". She looked like a star, her friends are so giving and so supportive.

We were whisked away in the white limo to meet up with Dad and go to the concert. Lance, the driver was so nice. Chris and Sierra leaned over the privacy divider and asked questions. He was so great with the kids. Once we got our tickets we were taken downstairs to meet Hilary Duff. She came out with her sister, Hailey and Sierra and Chris got their picture taken with them. Hilary requested that 2 be taken. So we have 2 pictures of the foursome. Our seats were 4 rows in front of the stage. Sierra danced and sang every word to the music. 2 diffferent moms across the aisle each told me how cute she was. We were so close, Hilary looked down several times and smiled at us. I told Sierra we were so close we could see her sweat. Sierra and Chris had a blast at their first official concert. The kids picked out souvenirs (hat, shirt, poster) and all the glow in the dark sticks. When the concert was done Lance whisked us back home. Sierra feel asleep on the way home. That was a great way to start off the new school year!

Last night we went to the Candlelighters of WWA BBQ, Bingo and candlelighting ceremony. It was great to see everyone and meet new people. Chris learned about Sibshops from another 11 yr. old sibling. We were at a park on the Puget Sound and it was beautiful. The candlelighting was very touching. We each had a small candle and large candles on stands were set up to honor: medical people, children going through treatment now, angels, and survivors "stars". Neal read one passage and Sierra lit the large candle for survivors. It was very touching because it was 9/11 and we remembered those who left us on 9/11. A sad, but heart healing experience.

May this week bring you the chance to savor every minute of life. Don't forget to stop and watch the leaves change color!!

Love, Team Sierra

Sunday, Sept. 5: I am such a deliquent writer. No news is good news. We have been busy, busy trying to eek out every second of the last weeks of summer. As you can see we have been traveling through Idaho. We spent two and a half weeks in the Sawtooth valley. My family came the first week and we all had such a great time. In a nutshell: we hiked, biked, went to Redfish Lake, paddle boated, whitewater rafted sown the Salmon River, fished, horseback rode, visited ghost towns and an old gold dredge, played football (my mom's first game!!), played the Great Grandma Wiggs Commememorative Ball Game, saw Midori at a concert and held late night star parties ( can't repeat what my brother said the first night I took him outside to see the stars--he could not believe you could actually see the milky way and the billion stars). We all have concluded it was the best family vacation in a long time. My siblings had never been out to the Sawtooths before so I was glad that it exceeded their expectations. My brother got to fish everyday...my sister got to run everyday, and if us siblings are happy--then everyone is happy! (Right, mom?!) It was a fantastic trip.

Later in the week, Neal's family trickled in from all over the globe. His sister, Hilary, came in with her family from Mexico City on her way to move her family to DC while they take language training for their post in Poland (State Dept.)The rest of Neal's siblings arrived by the weekend (from Kennewick, Helena, & Salt Lake City). All the cousins had so much fun playing together. Ryan is already 14-wow! Ivy and Grace had a great time playing at Redfish in the sand and hiking to the Lilly Pond. We had fun at the lake and cabin and celebrated Wayne's birthday with a dinner at Redfish Lake Lodge. We also had our own "Sessions" barbeque out in the sun under the 10,000 peaks of the Sawtooth Range as the sun set.

The following week we (Neal's parents and brother Stuart and sister in law, Carla) packed up and went on a 6 1/2 mile/1,500 ft. elev. hike up in the Sawtooth Mountains to Toxaway lake, with the help of llamas. The llamas spot packed in our tents, sleeping bags, stoves and food. We were up there for 4 days (at 8, 750 ft), took a day hike to Edith Lake and did lots of fishing. I got to get in some hand quilting :) during the few minutes of down time. The mountains and lakes were beautiful and the trout was tasty. Sierra and Chris are such troopers and were able to walk the whole way, plus exploring each day. Chris hiked up over 9,400 Sand Mountain Pass one day with Neal. Chris and Sierra both got to walk with Stuart and Carla's dogs (Rupert, Jane & Sprocket), so that was fun and it kept the pace. The scenery was awesome. The most outstanding part of the journey (other than seeing my mom's namesake lake) was meeting a farmer woman who was backpacking with a full pack at the age of 82-she was having the time of her life! There is hope for all of us.

School starts in 2 days and the kids are all pumped up to get back with their friends. Sierra was fitted with bright red glasses last week. She is excited to show them off. I do need to take her back in, though, to check the prescription because she is complaining that she sees clearer without them on. So she will get them checked, but soon she will be wearing them all the time. She asked if she had to wear them at night :>. She had such a kick picking them out...you'd think she was modeling for a photo shoot. Next week I will post the picture of her and her eye doctor (Dr. Grimm) goofing off together.

Other big news: Sierra got her "first" haircut. It was a spontaneous trim when Chris was going in for his trim. She finally let someone trim up her whisps. Now her hair looks like an intentional pixy cut. The grocery lady says she asks like a real pixy.

We are glad that Uncle Doug (Neal's brother) is here in Seattle for 3 weeks for his job. We are looking forward to some fishing and fun with Uncle Doug on the next few weekends.
Well, I must get the kids ready for bed, this second to last night of summer.

Live each moment, and thank you for your support and for checking in.

Take Good Care,
Love, Team Sierra

Wednesday, August 4, 2004 12:36 AM CDT

The summer has flown by so quickly. We have packed in so much. We are leaving again tomorrow morning to go to Idaho for two weeks. Both of our families will be there-we can't wait.

Sierra is doing GREAT!!! I am living on the happiness that her scans were great last time. I don't let myself think or worry about the next set until it comes up. Her cancer has lit the fire in me to keep these kids on a fast pace this summer so we soak in as much as possible before school starts. Sierra has so much energy, she can't contain it. Yesterday, the kids tore apart Family Grocer with their energy. I begged the workers to write a note expelling them from the store---I am so looking forward to grocery shopping alone again when school starts.

Sierra's attitude is so positive and inspiring. Her love of life and excitement is so contagious. Though, in her tired moments of personal reflection she goes through "post trauma." She is still traumatized by her experiences of the "shots" and procedures. Her fears are still real. She expresses her feelings of being so tired of looking different (and having people whisper "Is she a girl or a boy"), she is tired of the fussing with her eye medicine, skin cream, sun screen, sunglasses. In other words, she hates the fussy maintenance that was not there before May 14. She is glad treatment is over for sure, but she wishes, of course, she didn't have to worry about anything-she also knows it could be a lot worse! There is deep seated anger that she has this to deal with. On the other hand, she has deep discussions about the reasons God gave her this: "to make me positive, and be brave and to be strong." She has shared these feelings with us and her teacher this summer. We are helping her channel this emotional energy into some positive outlets (writing books for kids and doctors, designing a special doll,etc.).

We had a great time camping at Fort Ebey State Park for a week while the kids went to Coupeville Arts Center day camps. Sierra learned so much in the drawing and painting class; and Chris was in his element with mud and fire! Every day the kids were filthy with paint and mud, then we were off to the beach to wash it all off. Time stood still while we frolicked in the waves, tidepools and little lakes. When we weren't ocean/tidepool bound, the kids were either climbing cliffs or we were biking up and down the many trails--all of my favorite things in one place!!

Mid week my cousin, Dan, and a friend came to stay with us for the rest of the week. They had been mountain biking their way across the country (driving and stopping to race down huge mountains of Whistler,Rockies and Sierras). It was great to catch up with Dan while hanging out at the beach and at camp. Luckily, the annual sailing race was going on so we soaked in the beautiful views of Coupeville, with Mt. Baker and the rigatta of colorful spinnakers. Every night we cooked up something new on the campfire. Our last night we cooked shish-kabobob on the beach while watching the sunset. A perfect end to a perfect week in paradise.

I can't complain that when we have been home I have only had time for laundry, airing out camping gear and repacking. Last week while we had a "breather" we went swimming all day and for an hour we had the whole Cottage Lake pool to ourselves, wow! Also, the kids requested going to the Flight Museum (they went 6 mo. ago). The new "Courage" Wing is open as of 6/04. I highly recommend this interactive (Smithsonianesque) part of the museum-complete with live swing music-my favorite. We stumbled into it and were there an additional 2 hours! Other than it being very focussed on the WWI and WWII fighter pilots, it did an excellent job of teaching us about planes, history and the real stories behind the people who normally are left out of military history (women and minorities). The kids always enjoy the Air Force One, but the Concord was very trivial to them (a long skinny airplane with plastic so you don't touch the seats-big deal).

I must get finished packing. When we return, we will have one last week before school starts. Sierra is so excited about being in 3rd grade.

Take good care. Thanks for checking in. We probably won't update until after 8/22 when we return from the Sawtooths.

Love,
Team Sierra

Saturday, July 17, 2004 6:31 PM CDT

Sierra's first set of Off Treatment scans look good!! We are so excited, because that means her body is doing well recovering. She was in for her chest CT scan and Head MRI yesterday. She was excited to see the doctors and nurses and show off her: 1.) new hair 2.) port necklace and 3.) "Survivor" gold medal from the Relay for Life. She is proud of all three badges of courage. She also wears the Lance Armstrong yellow Live Strong bracelet.

We have been very, very busy this summer, making up for no summer last year. Since she came back from Camp Goodtimes, Chris has had sailing camp and boy scout day camp. Sierra has had lots of play dates with girlfriends and me in those two weeks. She likes the one on one time, and I do too!

Cousin Molly and Ana were just here with parents, Tracy and Andy. They came for 3 days en route from Canada to California. We had a nice "play" time and catching up. Sierra got a kick out of playing Polly World with them and hitting all the fun at Remlinger Farms.

Right now I am packing to take the kids camping on Whidbey Island for a week. The kids will take drawing and painting (sierra) and pottery/clay/fire (chris) classes everyday from 9-noon. I intend to clean up camp, bike ride, hand quilt and read. Cousin Dan (Daniel all grown up) and some buddies will be camping with us for a few days. We are looking forward to more cousin time.

We will check in after our camping trip. Enjoy your dog days of summer.

Love, Team Sierra

Tuesday, June something (29?)

As you can imagine Sierra and Chris had the time of their lives at Camp Goodtimes (sponsored by The American Cancer Society). I don't have enough room to mention all of the activities that we have heard of, but I will try, but first I must say that Sierra was either too busy or tired out at the end of the day and she forgot to open her carepackage/goodie bag that had treats and a camera in it. Luckily, her brother took pictures, so I can't wait to get them developed. These are few of the things they did: Argosy Cruise driven by one of the counselors complete with counselors parasailing off the back of the boat dressed as something crazy, canoeing, swimming, visits from firetrucks, motorcyles, K-9 dogs, conga lines,dance parties (Sierra apparently was the STAR), whipped creme fights followed by water fights followed by me finding all the wet clothes packed in their bags :) breakfast in bed, dessert first at dinnertime, carnivals, bike rides, field games, archery, camp fires, skits, contests,beach combing (the camp is on the beach on Vashon Island), what else? Do I need to say more? It seemed to be a kids dream come true (who needs Disney World when they have Camp GoodTimes). The other "best part" was that the kids each had very special counselors. Both of Sierra's twentysomething counselors are Leukemia survivors, and Chris's counselor's mom had cancer and now he wants to go to medical school-what a dear. Many of the counselors/staff are cancer survivors. What a powerful place, the energy just busts out!! I can see our kids going every year, then eventually being on staff.


Another touching story: We met a young man who lives here in Duvall-I recognized him from our local pizza place. He is 26 and has been cancer free for 20 years!! When I was talking to him, he mentioned that he read about Sierra in the local paper, he read the article and couldn't believe that she had the same thing he had when he was 5. When he said he had rhadbo in his jaw and went through radiation and chemo 20 years ago, I could have fallen over. No words can describe the emotions you have when meeting an incredible person like this...he gives us the hope for the future. I introduced him to Sierra and the look in both of their eyes was priceless (let alone the tears in mine!). For Sierra to meet someone that has walked the same path and is an adult and for him to meet a little girl who shares the same "thing" (I am avoiding disease words) was so empowering. This experience was very healing for everyone all around!

I think the kids are getting up, so I must sign off. We have a full week of Girl Scout Day Camp 8:30-4 everyday this week, I am leading a group of 6 year olds. It is very good for me to spend the days with innocent 6 year olds. Chris is in the field with the staff boys painting themselves with camo paint and having their own fun.
Enjoy the summer time!!
Love, Team Sierra



Monday, June 21: I need to get caught up. Our vacation in Arizona was wonderful. We first flew to Pheonix and met up with my parents. Boy is it hotter than hot down there. Though, it is a dry heat. 112 only feels like 110. The only bonus was, there was no humidity. We hit the pool at the JW Marriot as soon as we dropped our bags. As Sierra's last post said, she swam alot, but cut her foot. She healed fast and was back in the Lazy River, taking on Olympic speed. After swimming for 5 days basically, and hanging out in what felt like a cruise boat in the middle of the desert, we headed up to the Grand Canyon for some relief from the heat. We drove 4 hours north, through the hills and the temperature dropped 20 degrees. Dad landed us great hotels near the canyon. By the afternoon we were walking the Rim. For three days we hiked around, attended nature programs, the kids did their "Junior Ranger" work (which included alot of observation, writing poetry, drawing pictures, stories, etc). The kids took their work so seriously it was hard to pull them away. Chris also bought a book about the accidents in the grand canyon (hey, it holds the attention of a ten year old), we had to remind him to take his nose out of the book to eat.

When we got back to WA the kids finished out school. The whole week was consumed with Sierra's dance recital. Picture taking, stage rehearsal, full dress rehearsal then the real thing on Saturday night. What a great time she had! I was in tears watching her perform a tap number "Baby you can drive my car, Yes I'm gonna be a star, Baby I love you , beep, beep, beep yeah!!" I was so proud of her going hatless officially!! She had so much stage presence, she will be a star! (See photo album)

Yesterday (on Father's Day)Neal and I took the kids to Camp Goodtimes (a camp run by the American Cancer Society for cancer kids and their siblings). The kids were really excited about going. They had no trouble jumping right into the activities. Chris is rooming with another boy that we met at the Candlelighters of W.Washington Easter Egg Hunt. They both have great counselors. I know it will be a great week for them, it is very quiet around here. It is sad and we miss them. We can't wait to pick them up on Saturday morning. I know they are going to bring back lots of camp memories.

Well, thank you for checking up on Team Sierra. Thankfully we are doing well and life is returning to normal! We are so glad for this.

Enjoy your summertime.
Love, Team Sierra

Monday, June 7:

Monday: Sierra wanted to change the background to sunshine because we are in Arizona on vacation. Sierra is having a great time swimming like a pro-swimmer. She is turning the 'Lazy River' into an Olympic event. She looks like a pro, too, in her full body swimsuit and cap that matches. She wants to tell everyone Hello from the 107 degree heat. We will escape at the end of the week when we travel to the Grand Canyon (we are promised a drop of 20 degrees in temp.) Although the heat is hot, we are in the water or in the shade being misted by light mist. We take a break from the sun in the middle of the day. Today, Sierra was forced in due to a cut toe. She is fine and will resume her Olympic training tomorrow bright and early.

Until late, take good care.

Love, Team Sierra


Monday, May 31: Has it been 2 weeks since I have written. It has been a big 2 weeks. Sierra took off her hat at the pledge of allegiance at school on Friday. After this show of bravery, the kids in her class formed a "feeling line" to touch her hair. I had tears of joy. The kids were so supportive and encouraging. One child even commented that it was as long as his hair. They are dear, dear friends in that class. Mr. A took pictures- such a Kodak moment. She chooses to leave her hat on though--"it is my style."

Last weekend, we were honored to be part of the Relay for Life in Issaquah. Sierra was invited by Karen (from Eagle Rock) who organized the "Duvall Divas" walking group. They walked for 18 hours (yes, in the rain) all night to raise money to fight cancer and improve cancer awareness. At first Chris begrudgingly went with us, by the time we had to go, he begged us to stay. The kids both are ready to sign up to participate next year. What a powerful experience to be surrounded by such automatic commradarie. When Sierra arrived she signed a survivor quilt and was adorned with a huge survivor "gold" medal. (She proudly wears the medal whereever she goes now.) After a short ceremony, Sierra ran up to the police and asked if they needed help holding the banner for the Survivor Lap. They loved her help. She had a permanent smile on her face, leading the survivors around the track, waving and soaking in the applause from the sideline crowd. To top it all off she was greeted with a Survivor Reception of cake and ice cream "you know, mom, I had to have 2 helpings, to honor them." Later, at dinner, the waitress asked about her special medal and she explained she was cancer survivor. The waitress surprised Sierra and Chris with an ice cream sundae. She couldn't finish it, of course. She will never forget the whole experience of the day.


This past Saturday, we were invited to a farm to ride horses and cookout. There is a man in our town that went through cancer treatment while Sierra went through hers. We had heard about him, but did not meet him until I was introduced to his wife, Kim, coincidently at the gym. We instantly started scheming how we could get our families together (she has 2 little adorable children). That is how she arranged the horseback riding adventure. A friend of hers, who is a nurse, has a farm and wants to share it with people. What a nice escape! Of course, the kids loved playing with the horses, roasting hotdogs over the fire, and finishing with s'mores. Kim and I bonded and compared notes on everything from naturopaths to where to get sunprotection clothing. Kim heard it was Chris's birthday Sunday, so she insisted we pop down to Safeway to get him a special birthday cake. Boy, was Chris surprised, he felt so special, especially since it was a "store bought cake"-which is a step up from my homemade cakes they normally get. It was nice to see Chris be the center of attention. As shy as he is, he really enjoyed it!

We leave for Arizona this Saturday, for 7 days, for some sunny fun. We can't wait to get out of this cold Seattle winter weather. Tonight I am taking Sierra to a company that imports cute children's swimwear and clothes from Australian (Skin Savers). We also have shop in Seattle called Sun Precautions. Luckily, Skin Savers is close by in Kirkland and they are setting up a special appointment just for Sierra tonight so she can pick out clothes/hat/swimwear (or she won't wear it).

Can you tell by this journal entry we are supported in every way? We feel so blessed! Thank you!

Thanks for checking in on Sierra.
Love, Team Sierra

May 14: One year ago today, we heard those dreaded words that Sierra had cancer. In last week's post I vented about our mixed emotions. Things are better today. I have been supported by family and friends to help me be strong. Strength has come from a new friend as well... remember when I mentioned a baby and her dad that happened to be running and literally ran into the Candlelighters of Western Washington Easter Egg Hunt and family get together (the 18 mo. old has the very same thing Sierra has, and will finish tx in Sept.). Well, the baby's mom wrote and called me last week. Was I ever overjoyed!! I took the kids over to meet her last Monday. What a strong, generous and encouraging friend she is! We are praying that Samantha's scans turn out positive today. We know they will.

As we finished up dinner on the deck, I observed Sierra and Chris playing together. Now that Sierra is back to her normal 120 percent and her port is out, Chris is back to roughhousing with her--good clean fun, with no worries. Chris is so happy to have his playmate back. What joy it is to watch the kids having so much fun together again.

Sierra's class play was phenomenal! Amazing, incredible, fabulous...I can go on and on. Sierra was the old woman. She played it up and had some great lines. Everyone in the class did such a professional job, a lot of credit goes to Mr. A. (her wonderful teacher) for being a director-extraordinaire!

Neal's parents just arrived and we have lots planned for the weekend.

Have a great week, thanks so much for checking in!
Love, Team Sierra


Happy Mother's Day Weekend!! It's been exactly 1 year since we got the preliminary news that Sierra had cancer in her eye. A certain amount of sadness hits when I finally sit still (which is rare) and rest my mind-let the emotions come in and recognize that this is her anniversary. Our little girl is changed forever, as we are. Although many positive things have come from this experience (seeing Sierra's true stength, the people we have met, the closeness we experienced with friends and family), I still am sad and sorry that cancer had to barge in and take over without our permission. I guess that is what you do at milestones: you reflect, acknowledge, experience a little grief and emotions, but then you have to move on and "breathe a little bit more." There will be many, many more milestones to come, thank goodness.

Sierra is doing great and enjoying life so much. She rides her bike all the time, dances around, plays dress up, acts out little skits. She is fully appreciating being a normal 8 year old! It is really fun to watch her with her friends and at girl scouts--singing songs and playing those silly games. WWWHEEEWWW! She is back! I asked her what she wanted to do on Mother's Day, and she said "Visit Children's Hospital...wait, Mom, what do YOU want to do?" I think it great she is ready and raring to give back. Soon I can see her dressed up like a clown and entertaining the kids at the hospital. What a treasure she is!

Chris is bouncing back to being a normal nearly 10 year old. He plays a lot with the kids in the neighborhood again. For a long time he stayed nearby. Now he has the confidence to go ask people to play, especially if they have a trampoline (which we are going to have to get soon). He is more social and smiley again. He is progressing very well at electric guitar and plays with drummers at every lesson; which pushes him to quickly pick up new songs all the time. He is really coming into himself and what a handsome, talented young man he is!

My beautiful children are waking up to the world now, so I must go.

Love to everyone. Thanks for checking up on us...
P.S. Sierra's story will be on the KOMO 4 Children's Telethon Sat. June 12 in the evening.
Love, Sierra

Friday, April 30: We are are back into cyberspace again. Yippy!

Our computer crashed right before Sierra's big party. We have not been able to update you much, we are sorry. As a result, at this particular moment we still do not have access to party pictures (they are actually being stored for a short time at a "safe house" until we can reload them). We do have the pictures that were hanging out in our camera from our weekend away with my family on Whidbey Island. So enjoy these until we can get back the older ones, then we will go from there.

What a relief to have this computer up and running!! Our computer has been overhauled by two dear friends: The Steves (D. and B.)--thanks, guys, we appreciate all of your HARD work to test, rebuild, and finally diagnosis us with having a worm...hey, at least it wasn't cancer!! We will take all kinds of technical difficulties before cancer. We were so happy to find that we will get our "data" back (but out of all of that the most important are the 1/04-3/04 pictures that had not been saved to CD yet).

Now about Sierra!! She is enjoying herself, running innocently around without a care. You know that is the one simple quality that cancer (temporarily) takes from children--the pure, genuine full-blown playing! Don't get me wrong, you all know that she did a lot of living this year; but she was guarded and spent one day a week worrying about needles. This worry and fear is gone. Off into the sunset goes all the worries...Our last big worry was removed from her last Friday. She went in for day surgery to remove her internal Port-a Cath. She did great, and she asked them if she could have it "but only if you wash it first, can you do that?" Her request was granted, so now she has a new necklace. Let's see if she will wear it during her next CAT scan to throw the doctors off!

Sierra has a new appreciation for food. Her two favs: chocolate AND fresh tender baby spinach salads in her lunch! With that she has returned to her normal weight of 65 pounds (ideal is 66, and she 2 summers ago she weighed 70 pounds on Aunt Carla, the Vet's, scale).

Well speaking of packing lunches, I must go. I will write more later. Thanks for hanging in there with us--for a month...and for a year!! We love you!
Love,
Team Sierra

Sunday, April 18, 2004 11:16 AM CDT

What a great week Sierra and the family have had riding the wave of celebration!! We had great weather for Sierra's End of *Kemo* Party. We had such a great time visiting with everyone that came out. I was so glad to see nearly 130 people arrive to congratulate Sierra. A big thank you goes out to Mr. A for orchestrating the music, Karoake and for sewing the very special quilt that her classmates made for her. When I look at her and see her smiling I know she is looking at her friends on the quilt. It was great fun to see all of the kids playing in the sun, bouncing in the bouncer,running around and enjoying just being kids!!! I looked around and in a very surreal way said to myself "these are the people that have been holding us together this whole year!" If I had that deer in the headlights look, it was the look of awesome appreciation, this sentiment is felt by our whole family.

Sorry for the delay in updating, we have been out of town taking Aunt Sallye (who came the farthest from Arlington, VA!), Aunt Cathie and parents on a tour up Whidbey Island and tip toeing through the tulip fields. That is the good news, the bad news is that our computer crashed so this update is done on a borrowed computer (sorry, still no new pictures :( until we recover our computer. After this year, the prospect of losing computer data is really nothing to bat an eye at. Really.

Friday, April 9:

Friday: Sierra's scans are clear!! She spent the whole day getting a Cat Scan (meow), Bone Scan (whole body), and an MRI. She is such a pro at getting MRI's that now she sleeps through them. If you have had one you know it is LOUD. We are glad she is adapting. She has also adapted to having a photographer snapping pictures at everything she does or every smile she flashed. The photos for the hospital "appeal letter" were shot today.

It was a great day, to be at Children's and not get Chemo!! It was bitter sweet saying goodbye to the doctors and nurses and telling them we'd see them in 3 months. She has had an exciting day filled with family (my parents and my Aunt Sallye flew in from DC). We had a 2 hour break between scans and popped over to the Arboretum for a nice stroll among the azaleas, rhodies, cherry blossoms, and magnolias--a perfect day, I say. Sallye couldn't believe how big everything was--the ferns, helebores and of course, the dandelions "Is everything on steroids around here?" she said.

We are all touched once again by the amount of "hurrays" Sierra is getting. People know that it has been a long haul and we are glad this is over. We are also so thankful that she survived the treatment. All the prayers and positive thoughts are working--keep it up because she needs to stay cancer free!!

We are looking forward to a sunny day here in Seattle. For those of you not able to come to the party, we will post some pictures to show you.

We are blessed to know you and we can't thank you enough for supporting us along this uneven path. We hope to help you when you are in need.

With Love,
The Fullers
Sierra, Chris, Neal and Maria



April 6: Life is getting back to normal. I can feel it. Sierra's looking forward to her party this Saturday...look below for more details. We can't wait either.

Sierra is bouncing back to her old self! It is great to have her back 110 percent. Her scans will be all day Friday, we will keep you posted.
Take Care, Love,
Team Sierra


3/29: I don't think the kids will ever forget this past weekend. We were all in 7th heaven driving around in my friend's yellow convertible mustang all weekend. Saturday night was highlighted by a fantastic trip on the Washington Dinner Train. Sierra was greeted with a balloon bouquet at the table. The kids were a joy, they were very well behaved (does getting very dressed up help with that?) they truly soaked in the whole experience. The train car had a door that lead out to an open air car, so we would pop out there every once in a while. Chris and Neal were out there when we went over the 300 foot high 100 year old B'vue tressle-yikes. On Sunday night, we sadly had to return the car. When we arrived to take it back my friend let the kids jump into her golf cart and the three of them zipped around the golf coarse in the dark. A weekend of trains, golf carts and automobiles.

The Candlelighters of Western Wa. Easter Egg Hunt was so much fun yesterday. We got to meet other cancer families outside of the hospital. The kids played all afternoon, hunted eggs and got lots of great prizes (this easter bunny was extremely generous!). Neal even won the parents raffle. I won new friends and the comfort in knowing we have found another place of support. An amazing thing did happen. A man and is precious 18 mo.old daughter were running near the park and stopped at the play equipment. One of the organizers walked up to him and started talking to him. He had been running and happened to stumble onto the "Candlelighters Childhood Cancer Foundation" sandwich boards and stopped because his baby has Orbital Rhabdomyosarcoma. I told him that we have never met anyone else with Rhabdo-I was awestruck!! I called Sierra over so they could meet. I told him about how Sierra just finished and we showed him her eye so he could see that it does get better. They have 5 more months left of treatment, the baby is in her last week of radiation, just like Sierra had. I can't describe what it is like to meet someone else that is not only dealing with cancer, but the same exact kind of cancer. I didn't get his number or email address, but I hope they can write us. Later, the Candlelighter leader told Sierra, "See you are now an Official Candlelighter...lighting the way for others."

AMAZING!
Love,
All of us here at Team Sierra Headquarters


March 27: "She's Done, She's Done, She's REALLY,REALLY Done!!"

Sierra's last treatment day was one big party. Her papparazi included KOMO NEWS Channel 4, Children's p.r. staff, and us with our cameras and camcorders. She handmade cards for all 19 staff, made special collage frames (complete with miniture needles, lab coats, chest xrays, chart notes and meds) for her nurses and doctors. Chris gave out blueberry muffins to anyone and everyone. Every move and discussion was recorded by KOMO. She was unusually quiet and contemplative. I think she was a tiny bit sad to have to say goodbye to the people that have helped her through such a strange year. They showered her with balloons and invited her back to visit (minus the chemo!!)

I can't forget an important part of the day for the kids. My friend, who is a 10 year survivor of breast cancer loaned us her canary yellow convertible mustang for the weekend. This was her end of chemo gift from her family. We can't match that gift, but we can drive around in it all weekend. Neal and I picked it up in the a.m. and decorated the dash with Lance Armstrong stuff, and her Team Sierra hats...then we pulled into the school parking lot when all the kids were at recess. The kids were excited to be taken off in a special healing mobile. (For years Chris has asked about the car, "How's her yellow car, Mom?", "Can we go look at the yellow car in the parking lot?").

(Sierra's story will be aired June 12 on KOMO news as a lead into the Children's Hospital Telethon that day.)

The kids are all set to go on the Dinner Train tonight for, uh, dinner! We will drive 40 minutes south, to only take the train back up to our neck of the woods, then turn around. It will be lots of fun...of course, I have surprises on the train ready for the kids. This, to me is a very symbolic journey for us!

Tomorrow we are going to the Candlelighters of Western Washington's Spring Fling Easter Egg Hunt. Sierra will get to have fun with other kids with cancer--I haven't felt this excited about an egg hunt for a long time.

Thank you to everyone for the outpouring of so much love and encouragement throughout the year. Cancer has a way of making you shake down your priorities, and look at life as a gift, not a privilege. These new glasses help keep the focus on what's really important and help us appreciate the preciousness of it "all". This life shaking experience also enters us into an invisible club that connects us to other cancer kids and parents. Where we "know" how this cancer-thing is. It is a club you don't ever want to be in, but once you are in, you feel blessed to experience the incredible power of the human spirit.

I am ready to board the healing train and finally take a big breath.

Signing off with lots of love,
Team Sierra


Tuesday, March 23: Ok...not that we are counting, but we have 29 hours and 13 minutes to go until the last treatment. We have a special day and weekend planned for the kids and will be telling you all about it.....Thanks to all, for all your love and support!


(We have had trouble updating the website-as you can tell. I have lost 3 journals and have had trouble with uploading photos. For some reason we can't post a home page picture--how frustrating because it is a cute one-we will keep trying!!)

Sierra is counting down the days and minutes to the end of treatment! We are starting to realize that we will miss lots of wonderful people at Children's Hospital. Sierra really connects well with people (dah!) and she even still cries when she talks about the people she met at radiation last summer.

The most important thing you need to know is that Sierra is a GR8 8year old now. She had a quiet weekend riding her bike and hanging out with us and a few friends. We are gearing up for her big "End of *Kemo* Party which is officially set for:
Saturday, April 10th
noon
Tolt McDonald Park/Barn
Carnation
It will be a great time to get together to celebrate and to thank everyone for supporting us through this difficult year. Bring the family for fun, food and festivities. I know I am looking forward to breathing soon-Sierra will be screaming!!


(Directions to Tolt McDonald Park: located just south of QFC in Carnation on highway 203, the entrance is on the west side of the street. If you are coming from Seattle, take I-90 to Preston to Fall City and go North to Carnation. From 520, take the Fall City-Redmond Road to Tolt Hill Road).

SIERRA's LATEST LIST OF "ACTIVE KINDNESS":
In the photo album there is a picture of Sierra's prized possession: her new Lance Armstrong bandana, calendar, and card "that Lance Armstrong signed himself!!". She sends out a special Thank You to Chip in Boston for making the cross country connections to pull extra strings to get them to send her a special gift.

The last picture is of Sierra making one of her many deliveries that her Girl Scout Service Unit (a lot of girls) made throughout the year for her to take to share with the other children. They sent 1,000's (literally) of projects, games, coloring books, notebooks, crayons, tattoos and other fun things to fill the "hurry up and wait game" patients play every week.

Well, it is far too late and I must sign off now.
Thanks for checking in.

Love, Team Sierra

Sunday, March 8 (International Women's Day)

We just came back from the Seattle Center. One of those spontaneous trips downtown. We met up with Uncle Brian's (my sister's new husband) father who was at a show selling his exquisite shaker miniture furniture. It was like a little dream world to see all the dollhouses. (It was hard to resist starting yet another craft). We had fun playing in the center fountain, daring it to get us wet. Then off to the roller coaster simulator. Chris came prepared to treat his sister to the ride of her life. He felt like such a responsible big brother pulling out his cash for the ride and bumper cars.

Sierra is feeling well and ready for the world. Today she was singing her song "Watch out, world, here I come!"

The end is so close we can taste it!

Love, Team Sierra
Tuesday, March 2: You are invited to Sierra's "Kemo Party" on Saturday, April 10 1pm in Duvall!! Come and help Sierra celebrate and scream at the top of her lungs.


Sorry, I haven't written in awhile (remember no news is good news--thank goodness). I had hoped to get new pictures up by now...we have some great ones. I need a good block of time (what is that?) to do that. The weather has been so good and I have been feeling 100percent better, we have taken our spare minutes outside. Sierra has been very active with me in the garden again. When I am in the garden I flash back to last summer and my heart just sinks thinking about that awful summer. Sierra spent it miserably inside on the couch. I am grateful that now after a year off of the garden she is back in full force digging, weeding, scrubbing the deck, and prepping her garden for flowers. She has emerged with beauty and color, just as the tiny crocus and daffodils that have peeked their heads up. Yes, we have a lot to be grateful for!!! Spring is on its way, new life is emerging for Sierra.

I must tell you that we went to the 4-H general meeting (Chris is in 4-H). I had not taken Sierra since, well nearly a year ago. Many people had not seen her (probably had seen her in the papers). She sat contented with me drawing, writing out her "scedjawall" and playing hangman. 3 people must have looked over to her then me and whispered (as if to be polite so Sierra wouldn't hear if I had a poor response) "How is she doing?" Without missing a beat, stopping her work, or looking up she chimed in "4 MORE WEEKS!!" It is almost as if she is saying "What is the big deal...I am nearly done." It was sad last night, I was putting her eye ointment in (which she doesn't like to do) and she said "OK I can do this 4 more weeks." What she doesn't realize is that her dry eye is permanent. As much as I have told her she will be getting used to putting in drops 4x a day by herself at school, she has in her mind for just 4 more weeks. That's OK for now.

Sierra has lots of distractions between now and finishing chemo. Her birthday (8) is March 21, so she is planning her birthday and Kemo Party. Of coarse, last week there were lots of Girl Scout distractions, this week there are a lot of activities at school (as always). Today they wear p.j.s to school to celebrate Dr. Seuss's birthday, Friday there is a Jump Rope Show. Lots to do in the life of a 7 year old.

Sierra has other "news" but will save it to show with pictures. I know you are thinking HAIR...there is more to happiness now than hair!

Time to not get my kids dressed for school!
Enjoy the promise of spring!!

With Love, Team Sierra

Saturday, February 21, 2004 10:44 AM CST

Sierra has had a good week of Mid Winter Break. She has had playdates and a day long field trip to Seattle with the Brownie troop...Chris and I, though, have been sick with headcolds. We tell the doctors that "This winter, Sierra has been the healthiest of all the Fullers!" Her mild little chemo-cough is just that, it is not a cold, thank goodness.

Sierra has 5 (count them on one hand) more weeks until she finishes all of her treatments! Her official "Kemo Party" is set for Saturday, April 10 in the afternoon at our house. We will have lots of fun, and she can't wait to scream at the top of her lungs.

It is still morning and I am still sick, so I will close for now. Until later, have a good week.

Love, Team Sierra

Thursday, February 12, 2004 11:40 AM CST

I am glad I can access this website and actually send in an update.

Sierra was on 106.1 FM last Friday before Chemo to raise money for Children's Hospital. In four days the station raised $800,000. Isn't that amazing? Thank you to all of you that listened and made a pledge. Children's is awesome and we are SO fortunate to have it here in Seattle.
Mr. A taped the program and brought it to school for all the children to hear. When she returned from the hospital, the children all came up to her and told her she did a great job. Eagle Rock kids are so wonderful! We are very blessed to have such a great community.

Sierra is looking forward to her Valentine's Day party at school tomorrow morning. We love these distractions! After tomorrow's chemo, she will only have 6 more weeks of chemo, then she will be DONE with all of her treatments. She is counting down. She is doing fantastic, her weight at the Naturopaths the other day was 63 pounds, her color is good and she is "filling" back in, and of coarse, she has ENERGY!

Last weekend, the kids went rollerblading with Neal and had a great time (I was on a day long quilt retreat). The Naturopath was impressed at how active she has been and that "we are doing every thing RIGHT." She upped her fish oil dose, and kept the Milk Thistle at her original dose, she also gave her glutamine (an amino acid) and concentrated berry juice. Right now we are in the "support mode", then when she finishes treatment, we will kick in the "rebuilding mode" (more intensive antioxidents, organ boosting and immunity builders). The other thing I have read about is Melatonine. I have asked the Naturopath and dietician about this. Since it is a naturally occurring hormone, they say that Sierra should sleep in pitch dark and let her body produce the melatonin (vs. taking a pill). So out goes the hall light. I put in a tiny night light in the hall just in case someone gets up or gets scared. I have to say I am swiching gears, obviously. I am getting ready to jump from one trapeze to the other. To feel like there is a safety net, I must do as much research as possible and build in as much controls as we can through optimism, nutrition and supplements to prevent future tumors (nothing wrong with being an informed consumer). We are positive that Sierra has KICKED RABDO'S" BUTT" as Sierra says.

PS Sierra is looking forward to her "Kemo Party". It will be Saturday April 10 or Sunday, April 11. Everyone is invited. The venue is to be determined.

Thank you for checking in on little Sierra. Have a great day!!

Love, Team Sierra

I am having trouble with the website, I can only write in this box. Sierra did great on the radio! She is having a good day. We will have pictures soon for you. Saturday, January 31, 2004 8:50 PM CST

Sierra is now an official member of the "62.5" (Pound)Club. Notice that the president of the club signed her guestbook. When asked about how she feels about this she wrote, "Fooooood is really really goooood!"

Today, Sierra went skiing and she had a grand time going through trees and speeding down the straight aways.

Sierra has had a good week and she is looking forward to next Friday when she gets to attend the 2/3 grade "Goal Party" after school. She was in tears when she found out that she had chemo at the same time, so we rearranged her chemo schedule so she wouldn't miss the party. She has worked so hard to attend her second the second of three goal parties.

Listen to the radio next Friday morning 106.1 FM at 8:30 am, Sierra will be on during the Children's Hospital Radiothon. It should be a lot of fun for her. She loves to say "I have been on TV, in the paper, on the internet, now the radio-what is next?!"

8 more weeks and counting--March 26 is almost here!! Thanks for continuing to check on her and cheer her on!!

Love, Team Sierra

Saturday, January 24, 2004 12:31 AM CST

Sierra's MRI scans still look good. March 26 is Sierra's last day of chemo, if all goes well. Her Kemo Party is tentatively set for Sat. April 10.

She started her last round yesterday. She was in great spirits for her 40" long MRI (she is getting used to it), and she enjoyed seeing her "SpongeBob Nurse Pants" too. We were at the hospital for 5 hours...so I taught Sierra how to hook a rug. Mrs. Swanson taught Chris and I last weekend. It is different than latch hooking, and Sierra picked it up quick.

Sierra went to bed with nausea and woke with nausea (which is expected). So we are hunkering down and taking it easy as we watch the icy snow continue to fall off and on. I like these mini-vacations! I've got cinnamon rolls cooking.

Sierra has her sights on her "Kemo Party". She is scheming things that she can do for the whole school, and a party with friends and family. Word has it that I have a few aunts that are also thinking about coming this way to help celebrate. We have lots to look forward to and we feel like Sierra is being rooted on along in this last leg of the race!! Thanks for being so encouraging to her. I hope this will not be like the "10th" month of pregnancy and take forever. She'll keep busy and before she knows it will be March 26.

Take Good Care,
Love, Team Sierra

P.S. Chris is very proud his pinewood derby got 1st in his Den and 3rd in his pack of Cub Scouts this past week. He built it the same as one he built two years ago which also did well.

Friday 1-16-04

Is it already the middle of January. I am glad (for once) that time is flying by. Last night the kids had a little birthday party for Martin Luther King. The Denisons and Mr. A came over to help us celebrate with a southern meal and birthday cake. The kids had a great time making biscuits with cookie cutters and decorating the cake, complete with a "75" on it.

Sierra was so happy to not have to go to Chemo today, because "Miss Marta" from Classic King 98.1 radio came to the school to do a program. She had so much fun. Ordinarily, she would have had to miss it. After school I let the kids celebrate Sierra's Free Friday. Sierra wanted Strawberry ice cream (at C-C's Espresso) and Chris wanted to go to the bakery. So we got Sierra's ice cream first then walked to the bakery. Chris got a bowl of clam chowder, and they got a few treats for the weekend (I guess she is going to try to like donuts again). It is always great to have Sierra on a break...she feels great, she looks great, her cheeks are healthy and pink, her sideburn hair is growing and peeking out of her hat. Last weekend, Sierra scaled the REI climbing wall in record time. She amazes us at how healthy and fit she is.

Sierra is looking forward to spending the weekend with Neal, while Chris and I head to Shaw Island to visit Chris's former teacher (Mrs. Swanson). Sierra is looking forward to having 1-1 time with Neal and is going to try to take him to Skate King and a play.

Well, it is time to sign off.

Love, Team Sierra

1/2/04

"Sierra's On a Break"
Written and typed by Sierra Fuller

No more doctors for three weeks
No more doctors for three weeks
No more doctors for three weeks
Sierra's on a break!

Watch out world, here she comes
Watch out world, here she comes
Watch out world, here she comes
Sierra's on a break!

Thirteen more pokes to go
Thirteen more pokes to go
Thirteen more pokes to go
Sierra's on a break!

April's gonna come real fast!
April's gonna come real fast!
April's gonna come real fast!
Sierra's on a break!



Tues. 12-30-03 A few more days until the new year!! We had a very nice Christmas, and we hope you did too! We were blessed to have so many relatives here for the holidays. My parents came out a week before Christmas and stayed for 10 days. Gordon, Mayala and Jane (Mayala's teenage daughter) and Cathie and Brian came out. Gordon stayed until last night, taking the red eye back to DC.

What a big day Christmas was! I have never heard so many screams of joy. Santas from across the country, some of whom we have never met, sent gifts for the children and we are very grateful that so many have thought of our family this season. Luckily, Sierra skated through the week of chemo with that one Sunday of high fever. She had no sign of colds, flu or infection, and it was her predictable Sunday. Neal and I were up (Neal monitored every 1/2 hour), by morning she was normal. We did debate at 3 am if we should take her in to the hospital, but then the fever started to break. Anyway, other than that close call, Sierra has done very well this week. Christmas has a way of distracting one from any side effects!

We have done so much in the last week it is too hard to list. Since Jane had never been on a ferry before Gordon made sure we all went to Poulsbo on the ferry. Battling rain and blowing winds we had a great time in Poulsbo, and played poker on the ferry. We also went to Tacoma to the History Museum and the Glass Art Museum, that was a lot of fun. Both kids won prizes at the History Museum for doing treasure hunts and cracking mysteries. At the glass museum we were engaged for an hour at the Hot Shop watching artists form amazing art from molten glass. Now Chris wants to take up----glass blowing!

We are lucky that Neal continues to take another week off of work. It is great to have so much family time. The kids have commented many times that family is more important than presents. Speaking of family, I need to join them for lunch.

Until next year,

Love, Team Sierra

Sunday, Dec. 21:

Happy Holidays to you! Sierra continues to fight her 2 days of fever. She is up and well enough to hang out with Grandpa in her PJ's. They are reciting the Sunday comics back and forth to one another. This is the good stuff!! Grandma took her to the store yesterday and from the cart, Sierra shopped from a carefully prepared list. She knew exactly how much money (her own money) she had. Grandma reported that she is the most thoughtful, yet decisive and efficent shopper she has seen (she did not get that from her mother!). After Sierra paid for the gifts with her many $1.00 bills and change, she took them to the gift wrap section. She left the store with all her presents bought and wrapped. She leaves all of us in the dust--and she was not even feeling well!! Right now Grandma and Sierra are discussing the nativity. She loves playing with the nativity. She especially loves the new nativity from Hilary (from Mexico). Her spirit for the holidays and her love of her family is precious. We are enjoying these quiet days leading up to Christmas.
This just in: her temperature is down to 99.6. There is lots of celebration here!

Peace to you.
Love, Team Sierra

Tuesday: Thank you for visiting today and checking up on Sierra. She is doing very well!! You must be so busy getting ready for the holidays--so we appreciate you putting aside other things to see how Sierra is. She is so excited about Christmas and all the accompanying activities.

We can't bring ourselves to get that Christmas letter written and sent out this year. We can't pretend, gloss over nor neatly "package" our life in the last year. We have started it and scrapped it many times. How can we try to put into one piece of paper the unexpected journey that we have had to take this year? How our life was so perfect, then one day an uninvited stranger (cancer) barged into our home and tipped our lives upside down. We also would not have enough space to be able to thank everyone for the incredible love and support that has come our way this year. How could we document all the tiny moments that would have passed us by "before"? Like how Sierra's little ears feel when you kiss them at night. Or seeing how Chris taps to the music beat when he bakes. Or enjoying the times we all choose to hibernate for the night, play hooky from our activities, eat dinner and sing to the Christmas movie. We have had good times this year...we have kicked the uninvited stranger out of the house-told it to never return.

We are looking forward to my relatives coming for the holidays. The fun starts this Friday night! This year will be a very special Christmas, for sure.

May you find a specialness about this holiday season that you can cherish forever.

I guess that would be the Christmas letter. From our happy home to your happy home--Merry Christmas!!

Love,
Sierra, Chris, Neal and Maria


Wednesday, Dec. 10: As you can see from the pictures, Sierra is enjoying the holiday season!! She has had a good week...she was not sick or feverish over the weekend from chemo. We had a pretty normal weekend. The highlights were: cutting down our Christmas tree at the farm down the street and going to church. We have been searching for a church family and we feel closer to finding it. We are excited about a new door opening.

I am coasting through the holiday season, with what feels like a new pair of glasses on. Every year I try to be very mindful of the meaning of Christmas. Always, I must be deliberate to not get blown over by the commercialism. I flashback to my childhood when we had a simple Christmas eve service in a barn, where Christmas started. You would never know that by shopping. I ask myself: What do I want the kids to remember and hold special? I find myself asking the kids "What do you think life was like when Jesus was born?" "What was it like to live in a barn?" "What kind of food did Mary and Joseph eat?" "How can we give our gifts to others?" We have been inspired to research how we can help people in other countries with basic needs: a mosquito net to prevent malaria, a medical kit, a cow on the website: tear.org.au/ We have been moved by the writings of another family effected by cancer who is facing a sadder Christmas. We are thankful to them for reminding us of what is really important.

Peace Be With You,
Maria and Team Sierra

Tuesday, December 2, 2003 7:20 PM CST

We hope you had a nice Thanksgiving. We have so much to be thankful for. Sierra had a very exciting week!! She especially enjoyed finishing the marathon and seeing the sea of yellow "Team Sierra" supporters. She was treated like a celebrity when she and Sara led the way at the Start Line and she was pulled over to the sidelines for a King 5 News interview. She is a bit embarrassed by all the attention, but she knows that she can be a role model through the news stories. She was on King 5 News last Tuesday and all last weekend, the front page of The Seattle Times on Thanksgiving, and the King Co. Journal on Saturday. It is nice to resume our normal routine. Needless to say, we are very proud of her!!! We owe so much to Coach Paige for "running" the Running/PE Program at Eagle Rock. If it wasn't for her, Sierra would have never been running the Kids Marathons all these years, and we would never have known to do this on our own. Thanks, once again, Coach Paige!! You are Sierra's role model and inspiration!!!

We are grateful to the 18 family members that traveled to support Team Sierra.

On Sunday, Sierra spent the day fighting a high fever, but managed to enjoy swimming and the Elf movie with my parents. Last night, Grandpa taught the kids to play poker. Once Sierra learned how to play, she was on a winning streak. Now the kids can't get enough poker. Watch out!

Gotta go, it is time for dinner. (Speaking of that, Sierra is back up to 60 pounds, she is only 4 pounds short of the normal weight for her height--we are so thankful the scale is tipping back up!!).

Love, Team Sierra

Thanksgiving, November 27, 2003

We have been through our trials this year, but with that we have been given the gift of acute awareness of the simpler things in life. When you are close to getting it all taken away it is easier to step back and see clearly the little things and moments that are important. Sierra and Chris's incredible inner energy, their unending resilence, pure and innocent playfulness, looking into their eyes and seeing their soul, the sprouting of Sierra's new hair, Sierra's eye opening a cm. wider, their goofy jokes, their soft little cheeks that we rub when they sleep, their loud voices, their little squabbles, their individual talents,everyone being home and tucked into a warm bed, the stillness of the mornings, their interest in the miracles of life, the last pile of snow that remains, Baby Grace's cooing and first steps, Ivy's quick wit and laugh, unselfish gestures of friends, the cycle of life, our passed relatives who have given us the gift of enjoying life. These everyday miracles we are grateful for.

We are grateful that our family has gone to great lengths to get here to be together. Hilary, Scott, Ivy and Grace from Mexico, Mom and Dad Wiggs from VA, Mom and Dad Fuller from ID, Doug from UT, Stuart and Carla from MT, and Leslie, Brett, Ryan from Tri-Cities. We are thankful that they made it all here safely.

We will all be running with Chris and Sierra in the Kids's Marathon this Saturday as they finish their last 1.2 miles with their classmates. It will be tons o' fun.

Have a happy, happy Thanksgiving!
Love, Team Sierra

Tuesday night, Nov.25: King 5 News ran a story on Sierra and ERMA tonight!! Check out the King 5 website link below.

Tuesday, Nov. 25:Just a quick update...KING 5 news was at Eagle Rock today to interview the kids about running in the Seattle Children's Marathon....the link to the story is below.

Nov 19,2003:

This is Sierra tipying. It is snowing!! We go to school 2 hours late. We already were getting out at noon. So we will go to school for fordyfive minits!! Is it snowing where you are???
From Sierra

Sunday, November 16, 2003 8:10 PM CST

Another week closer to the end of treatment!! Sierra had a good week. The hospital called later in the week to say that the cultures from Sunday's visit came out negative. The doctors are still stumped by her fevers (I'll take predictable fevers over infections, obstructions or other more serious things).

Sierra continues to adore her new hair growth. She was looking at it with awe this morning in front of the mirror. She said she was "enjoying it while I have it!" Then she made up a song "My name's not Baldy anymore, now you can call me Hairy!!!" Seeing the hair makes getting treatment a little bit easier, and she knows for a FACT that she will grow her hair back. This is very encouraging. She has started writing out her "End of Kemo Party" invitations.

We are all looking forward to Hilary (Neal's sister) and her family to arrive from Mexico City at the end of this week. All of Neal's family and my parents are coming for Thanksgiving. As I make preparations for Thanksgiving I give thanks every day (more than once) for our family,friends, wonderful school families and close community. We are thankful that Sierra is past the worst of her treatment and continues to do so well. We are taking time to recognize every one of Sierra's pieces of hair and her incredible spirit, Chris's handsomeness and multiple talents, and we drive slow to look at the cows and awesome mountains, look at our children, enjoy the sunshine and fresh air, hear the sound of the rain, and thank God every time we walk into the hospital doors that we are coming in for just a few hours and not staying longer or living at the hospital as many ill children and their families must do everyday. We have new glasses on. Happy Thanksgiving Season!

Love, Team Sierra

Monday, November 10, 2003 12:07 AM CST

Monday: Yesterday Sierra fought the "predicted fever". Last night I had to take Sierra to the hospital. Neal was out of town, so our neighbor, the Klein/Robkins took good care of Chris. Though I knew he was in good hands, it still made me sad that I had to pack his bags and send him over on his own. Sierra was so upset and feverish, I had no time to make an official social delivery of Chris...her fever was climbing and we had to jet. I am so proud that Chris is responsible and being 9, he can walk alone to the next house. Sierra didn't want to get dressed to go to the hospital. When she realized she had to choice, she was fine. We cranked the Radio Disney songs and she was distracted. By the time we got to the hospital her fever had climbed to 103.5...a new record for her (she woke from a nap with a 102.9 fever). She managed getting her port accessed with newfound bravery. It is still so difficult, but she breathed, concentrated and calmed herself so that she could take it. She rested while the labs were being run. When the resident ER doc. came in, we knew him!! We both shouted "Boots" (that's his name). It was like a mini-reunion. She couldn't wait for him to feel her new hair. We had not seen him (thank goodness) since her hospital stay in July. He was great, as always, with her. He said she had a tiny bit of redness in the ears, but it was something to watch. Her counts were very high, which is good. So she was released. Hooray!! When we got in the car and started driving away, she said she couldn't wait to go to school the next day. I agree, our regular routine is welcome any day.

Love, Team Sierra

Sunday:Sierra had her second treatment of her third round this past Friday. Our friend, Moriah and her baby joined us for the treatment. They brought LOTS of toys for the clinic and the inpatient oncology floor. They will be very well received.

Sierra started fighting her fever last night at 9pm and went the whole night being hot. At 6 this morning she woke up still feeling crummy, with bone pain. It is nearly 10 and I am waiting for her to feel better. She has done so well at concentrating on getting better and feeling good. She is hanging in there. Unfortunately, she had to cancel a play date with Corina and that was disappointing. Thank goodness her friends understand!

Sierra's peach fuzz is so cute. She showed her head to the doc. and Moriah on Friday. It is dark, dark brown and about 2 cm long. I told her it is nice to run our hands through it, but don't get attached to it. It is good to know that it will come back for good so fast when her chemo is over in March.

Gotta go take care of Sierra. We will update soon.
Love, Maria and Team Sierra

Thursday, October 30

Thursday: Happy Halloween. Sierra had her second set of scans today and they look great! She started back up with the chemo today. She had fun seeing Julie in the clinic and spending so much down time with her. Julie was one of the first kind and compassionate nurse assistants that we met when she was diagnosed...she has gone on to finish the Child Life training and is working P/T at the clinic. So we hope to see her more often.

Sierra also had fun putting on her googly/springy eyes for everyone. Wrapped up in her Halloween witch fleece blanket she got her coarse of V and A and all the anti nausea drugs plus the flu shot. She is so proud of that flu shot, bec. she knows that she is one of the first to get it done this year!

I am packing to go back to Virginia by myself to be with family for Grandpa Broome's memorial service. It will be nice to go back and be with everyone until Tuesday. Neal will do fine holding down the fort and taking care of the kids on their 1/2 days of school next week.

Until next time, be safe and Happy Halloween!!

Love, Team Sierra

Sunday: Sierra has had a good week and weekend. She reminded me that she needed to have someone over for a sleepover NOW because it was her last weekend on her break. She quickly made arrangements and soon had a partner in the Polly World. She and I have decided to make a sleepover plan with plenty of lead time. We are so out of even the idea having someone over, we forgot it was even a possibility! She, of coarse, wants to invite 10 girls over at one time...
When the girls were brushing their teeth Sierra had her hat off and we were telling Paige why this weekend was so special, and I explained she hasn't had medicine in 2 weeks. I made a comment that Sierra feels really great and her hair is even coming back in (as peach fuzz). Paige said "Oh, yeah! I see your hair!" She said it in the most supportive and geniune way.

After we came back from church today, I went into the garage and there was a big chalk note on the floor that said "I like tap, because it is fun...practice makes perfect!" She had been tap dancing and sweeping the garage, later she put on a show for me, as she clung to the garbage can.

That is all for now. Thanks for checking on her. She goes back in this Thursday for her scans and chemo. I am sure everything will be perfect! PS she is dressing up as a nice witch for halloween.

Love, Team Sierra

Thursday:
Team Sierra is still on chemo break! We all love it as there is more energy in the whole family. Sierra has had a few visitors and play dates this week that have been great. Her preschool teacher, Christine and her daughter came to play...the girls had so much fun together-Calyse is adorable!! Next time they are here I will take a picture (I forgot this time). Also, Moriah came over with her new son, and Sierra got to hold him. She was amazed at how small his fingers were and cute he is. Babies are a miracle. Megan and Curtis came over, too, and Sierra couldn't believe Curtis could walk so well. They are precious kids. The girls had fun with Polly Pockets and Chris helped Curtis learn about trains. These moments are priceless.

At one point this week Sierra said with a wide smile "I have an APPETITE!" She appreciates having her regular stomach back. We took advantage of her break and took a three day weekend to Leavenworth (less than 2 hour drive over the Cascades). We felt free to leave town. The hardest part of the trip was negotiating with the kids on when we could leave. I wanted them to miss the whole day of school, but they didn't want to miss a day of school so they negotiated to have us pick them up at noon. The drive over was spectacular with the changing colors of the leaves-red, orange, yellow. With the extra rain lately, the waterfalls were overflowing. What a sight to see.

When we got to Leavenworth we checked into a B&B, then went off to play mini-golf and have an Italian dinner. We came back and played with the innkeepers family (a girl 8, and boy 5, that the kids got along great with). The rest of the weekend we went on two hikes, saw lots of large salmon swimming upstream to spawn, and saw wildlife watching from a bird blind. Neal and the kids went to the family fun center (a.k.a. drop Mom at the quilt store and go play games). On Sunday, we went over to Cashmere after a hike. The Pioneer Museum is amazing (for such a small town). It is so kid friendly--the kid's went on a treasure hunt, searching for various objects in the museum and 12 pioneer outbuildings. I was very impressed by the expansive collection ("Even Herb would be impressed"). After playing at a pumpkin/fruit farm we headed home knowing that we did as much as one family could do in Leavenworth in three days!! Chris and Sierra both asked when we could come back and go cross country skiing as they remember our trip there last winter.

On Saturday morning while Leavenworth, Sierra woke us up at 7:30 am (very unusual for her to get up that early) "Wake up, look at that sunrise!!" She brought to our attention an incredible sunrise. Streaks of gold, reds, oranges and pinks streaked the skyline as it hung over the mountain range. I was so thankful that she was in tune to the miracle that that day brought us. We found out the next day that my Grandpa Broome (age 89) had died that very morning in Virginia. I told the kids that he had sent us the beautiful sunrise. In talking with the kids about his death, Sierra spoke with knowledge that his spirit is with us. As sad as the whole experience is, I am grateful that the kids knew him so well and have such fun filled and joyous memories of their times playing with him. The kids know that they were extremely precious to him. I have lots of pictures that will keep his memory alive and he has left a legacy in his guestbook entries as well. Sierra is working on story that she will read (on tape) for his service, "The Grandpa Tree". I sent him a (primitive) painting of the Grandpa Broome tree 2 weeks ago that was inspired by this story that she read to me about a month ago. To hear it from her, in her clear, gentle, high pitched little Sierra voice is incredibly moving and comforting. Also, the first photo on the photo page, is the Happy Howl-oween card Sierra sent to Great Grandpa Broome a few weeks ago.

Thanks for visiting us!! We are glad to have so many supporters. Sierra thanks you for thinking of her and praying for her.

Love, Team Sierra

Sunday, October 12, 2003 7:39 PM CDT

Sierra is officially on her second chemo break! She has sailed through this second round, hasn't missed a day of school. Sierra is having a great week. Her Grandma and Grandpa Wiggs are here visiting for a week from Virginia. After chemo on Friday, the girls (Sierra, me and my mom) went to have manicures. Sierra has such long finger nails. She says that I am growing hair for her (she won't let me cut it) and she is growing fingernails for me (since I can't grow mine). Her nails are beautiful, and the manicurist added a few little decals as a special touch. She felt pretty and very special.

The chemo visits are becoming routine, though the last 3 times the nurse has had trouble getting the port accessed. Sierra says it doesn't hurt, it is the pressure that bothers her. The nurses are understanding and very caring. We notice that as dramatic as the whole thing is every week, at least she has a quick recovery. Sierra's appetite has been holding up so she didn't lose weight. She weighed exactly the same as last week. She had Actinomycin on Friday and has done OK over the weekend, with a bit of (expected) nausea on Saturday morning, Sierra chose to stay close to the car (with Neal) while the rest went to pick pumpkins (see photos). Later in the day she felt much better and the evening was filled full of quiz and writing games.

Last weekend we picked 31 pounds of apples in a matter of 15 minutes. The kids have had fun peeling apples with the peeler/corer/slicer, eating apple pie and drinking lots of cider. Fall weather is here and it is refreshing to feel that we are moving through the year---the faster it goes the closer we are to spring and the end of treatment.

Thanks for checking up on Sierra...thanks for caring and thanks for sending positive thoughts--it is working!!

Love, Team Sierra

Saturday, Oct. 4

Saturday: Sierra's chemo appointment went very well yesterday. She is getting more used to getting her port accessed. Luckily, Anne from Child Life has been there every time to help out. The hardest part for Sierra is leaving school an hour early. She did ask the Doctor if he would come on Saturdays to give her chemo so she wouldn't miss school. He told her she did not want to see him on a Saturday morning! We reported to him that she got the nausea and high fever (but not high enough to have to take her to the hospital) last Sunday as predicted. We have tracked her reactions to Vincrisine and Dactino. She always gets that fever and nausea 7 days after. The Doctor is still dumbfounded by this side effect. He just looked down at her and said, "Sierra, you are VERY UNIQUE and SPECIAL... there is no one else out there like you!"

She gained 1/10 of a KG. (I guess she was wearing long sleeves). We were in and out in 1 hour 5 minutes!! She has had a good weekend so far. No complaints. Tonight we went to the Harvest Celebration at the local dairy barn to hear our favorite singer, Brooke Pennock and her band play. It was a real treat, because she has just signed on with a recording company and has come out with a bunch of new songs. Sierra tuckered out at 8. Now that she has a watch she knows she is supposed to go to bed at 8ish. Before leaving Brooke wanted pictures taken with Sierra. Before leaving Brooke told Chris to be nice to Sierra "because she is gonna be a big star one day."

On that note, I will sign off.
Love, Team Sierra


Wednesday: Sierra is still awake...she wants to tell you another of her favorite jokes: (she will be typing this)
"An apple a day, keeps the doctor away...now if we could find something for the lawyers!"

"Things in life are scary, yeah, they can be scary, they can be as scary as a.......a two story outhouse!"

We love you and that's not a joke!
bye, I need to go to bed.

love,Sierra.



Monday: Sierra wanted me to tell you some of her favorite doctor jokes:
A kid walks into the doctor's office. She has a cucumber up her nose, a carrot in her left ear and a banana in her right ear. "What's wrong with me?" she asks the doctor. The doctor replies,"You're not eating properly."

Kid: "Doctor-doctor, will I be able to play the violin after my operation?"
Doctor: "Yes, of course!"
Kid: "Great! I never could before!"

Doctor: "Did you take the patient's temperature?"
Nurse: "No, is it missing."

Sierra's favorite redneck jokes:
You might be a redneck when you mow your lawn and you find a car!

You might be a redneck when you catch Santa because you thought he was a burglar!
(Fuller/Wiggs disclaimer: we are allowed to make redneck jokes, we come from Idaho and Virginia, and therefore MAY have this unique distant family quality!)

Send in some of your favorite jokes!

Sierra's other thoughts this week: "I still believe in God. I think he said that Sierra should get Rhabdomyosarcoma. I think I am supposed to learn that you don't have to have hair to be pretty, that is not important."

Sierra had a good week. The "Make A Wish" Wish Makers met with Sierra. They were so nice to her and Chris and one played and drew, while the other Wish Maker talked with Neal and I. Sierra drew and wrote out her wishes. She submitted her top 3, but here is a list of all her wishes (some were combined later). They are not in order of importance:
1. Meet Hilary Duff (Lizzie McGuire) #1 (she is a teen singer/actress)
2. Meet Amanda Bynes #3 (she is a teen comedian)
3. Get Laura into my school.
4. Meet Bill Gates and ask him how he invented computers.
5. Swimming Pool (#2)
6. Become a famous super star.
7. Go to Rome, Italy.
8. Make my own TV show.
9. Become a singer. (combined with #1)
10. Be on the Lizzie McGuire Show (combined with #1)

Last weekend, Duvall had their 2nd Annual Outdoor Quilt Show. Sierra had treatment on Friday, and she wasn't feeling well on Saturday, but she managed to go down and see her quilt wallhanging. It was displayed at Sunny's Art and Sun Spaces, right out front. It was beautiful. Sierra had picked out all the fabrics and I quilted it. I named it: "For Sierra: Color Your Life". It was fun to be inside the store and peer outside and see the people come up to the quilt. One lady walked up to it and dropped her jaw like she was saying "WOW". I hope it was because of the colors, not the poor stitch quality from my old machine! When the kids were done playing chess on Sunny's $350 set, we went to the fabric store and she started picking out fabric for the next quilt! That distracted her from feeling under the weather.

It is Monday, so Sierra is back to her ol'singing, Polly playing, happy go lucky self!

Have a great week!
Love, Team Sierra

Sunday, Sept. 21:

Sunday: As you can see from the picture, Sierra started Ballet. She takes it very seriously and loves the individual attention.

Sierra gained nearly 2 pounds this week!! She continues to keep eating and being active.

Her Aunt Leslie (Neal's sister) was here for a short visit and we had fun playing games.

Sierra is having a pretty o.k. weekend. She had her two medicines on Friday. She hasn't felt super well, but well enough to go to the 43rd Annual Duvall Firefighter Breakfast and eat an ear off Mickey's pancake head. After that she was specially fitted with a new bike helmet, then she rested up for a friend's birthday party. No time for feeling sick.

Well that is the latest from Team Sierra! Thanks for being here!!

Wednesday, Sept. 17: Sierra escaped our head colds. The mail lady delivered Sierra a special package today. She will get it trimmed and colored tomorrow...yes, her hair came today. You will see pictures this weekend. Her HipHat came just in time for school pictures. Chris even paid her an unsolicited compliment (with a smile) and told her it looked like her own hair. That is a big deal coming from your 9 year old big brother.

Sierra continues to swim well, like an otter. She can swim the crawl with near perfect form and correct breathing. Chris and Sierra don't ever want to get out of the pool when it is time to leave the lesson. Chris has mastered the crawl and takes great pride in diving to the bottom of the deep end to pick up torpedos.

More updates later.
Love, Team Sierra

Sunday: Sierra has had a great week! She has been busy and she has kept up very well. This week she swam Monday through Thursday after school and on Tuesday she started ballet. She is the only student so far in her class, so she gets Peg's (at TJ Dance) full attention. Very cool, but she is hoping others will join her. Sierra can't wait to start Tae Kwon Do (when swimming lessons are over). Until then she and Chris trade off playing Mrs. Taylor's piano and practicing on the punching bag. They time themselves for 5 minutes then trade.

The kids both love their teachers and schoolwork. Sierra cannot wait to officially start homework this week.

Good news! Sierra GAINED WEIGHT! OK so it was the heavy shoes the doctor swears we made her wear. No, seriously, she did gain a few ounces, so she is going the right direction. We met with the dietician to discuss(disect) her food journal for the week. The ONLY day she even came close was the morning she had a sausage from----McDonalds, I am ashamed to say. It was early morning and I had to get to the paint store and well, I thought she may eat something. By gosh, it got her calories up!! She is a healthy eater and prefers very low cal food (cheerios, soup, turkey sandwiches with mustard). We are having to dig deep into finding high calorie things. I will hang out at lunch with her to make sure she eats, or take the kids home/or out for lunch just to make sure. I am realizing she cannot spare a meal!

We have figured out a pattern with her fevers. It is Sunday, and she has NOT had a fever. We tracked the pattern to the first V treatment following the VA treatments. So we have two weeks until the next fever hits. WWWEEWWWW!

It was a tough week on Mom and Dad, this week, as they had fevers and were sick most of the week. Fortunately, the kids don't seem to show any signs of illness yet. It is tough to keep your distance from your kids when you want to hug them all the time.

My Grandpa Broome is in a Rehabilition Center (kind of like a 20 day nursing home). He gets PT and OT 2x a day 7 days a week. He is getting into the routine and realizes he can get stronger...so he is committed to the gym. Anyway, I was telling the kids that he was there and not at home right now. That he needs to have nurses help him get stronger. They know he has emphezema, and they talk about how he can't get new lungs. Sierra said after much contemplation, "I'm glad I have cancer and not some DISEASE!" Chris chimed in,"Cancer is a disease." Sierra thought a minute..."I'm glad I have cancer and the doctors know how to cure me, instead of a disease where the doctors couldn't help me." That's our girl, looking on the bright side.

Sunday, September 7, 2003 9:54 PM CDT

No news is good news! Sierra had a great first week of school! She easily jumped right into the new routine. Both Sierra and Chris's new teachers are EXCELLENT! That is one less worry that I have now! Sierra's teacher, "Mr. A", has been so supportive and great with her, and most importantly he treats her like everyone else. Though, he did do a little "experiment" the second day of school. The kids were making bees to represent Being Responsible and Being Respectful. He told the class: "The person with the shortest hair at your table can collect the bees." A boy at Sierra's table looked around and got up to start collecting the bees, because he said he had the shortest hair. Sierra said "Wait a minute!!! I have NO HAIR so I get to collect the bees!" We think it is great that she stood up for herself and that other kids don't really consider her not having hair. We love our schoolmates and school family!! :) The parents have really raised their children to be kind, non-judgemental, and very caring towards others.

Speaking of hair, Sierra ordered her hair (Hip Hat), it is 18 inches, dark brown with bangs. She will be able to "style" it curly or straight. It should come before picture day.

My cousin, Tracy, changed her travel plans and included Duvall on her way back to Cincinnati from Asia. We were so happy to have her spend the weekend with us. We had a low key visit, we walked around town hitting the regular spots we like to frequent: Pumps and Grinds Coffee Shop (or P&G-which is funny because Tracy works for Proctor and Gamble - another P&G), the Used Book Store, Sunny's Art store and some of the "Duvall brand antique shops". The kids, with paint support from Neal, painted their pickets at P&G. You can't miss them (pictures in the photo album)! Tracy got to spend quality time with Sierra reading to her and rubbing her back. Sierra appointed her the "BEST COUSIN MOMMY"! We were sad to put her on the plane today, but she must be off to see her little girls, Molly and Ana.

This afternoon Chris and I went to visit the local cat downtown that just had kittens (at the Odditorium). We found a brand new (in the box) but old apple parer, peeler and we have been...peeling, coring apples all afternoon. What a great way to welcome fall. Sierra will eat the sliced peeled apples---I am SO happy about that. She has eaten well all week, but not this weekend. She has lost some more weight and just getting food in her when she doesn't feel well is a trick!! (Plus she has a cold sore and it hurts to chew). It is the Sunday after Vincristine only, so guess what she is doing today? She is fighting a fever. She feels crummy and hot. This is so normal and a predictible Sunday routine (minus the hospital trip). When she gets V and A (every 3rd week) she also gets antinausea meds pumped in that probably prevents the fever. We will have to request that med. on V only days as well to prevent this.

If you are missing my Grandfather's guestbook entries (many of you are sweet to ask about him)... he has been in the hospital for a few days. I will keep you posted on what he is up to. My Grandma Wiggs (my dad's mom) would write in if she had a computer. She is back in Virginia and at 88 is still keeping a house, and cooking for all the many relatives. She sends the kids toys, Mini pages and batches of cookies. I need to fly her out here to cook up good smelling things to entice Sierra to eat more!!

Well it is time to get these school children to bed! Take Good Care. Hug your loved ones!

Love, Team Sierra

Sunday, August 31, 2003 9:14 AM CDT

Sunday: On Friday Sierra had chemo. The actino. and vincristine...they have given her extra anti nausea drugs with it lately. She has done well with that. She felt well enough to go on a grocery store shopping spree, thanks to The Family Grocer employees! She went hog wild picking out things she never gets to get: a nail kit (off the toy rack), "commercial cereal" (Lucky Charms, Scooby Doo), extra fancy popcicles, fancy yogurt, and normal things: lots of veggies and watermelon! She had a great time!!!I wish I remembered my camera :(

Yesterday, we all went on a family hike, 2 miles up to Barclay Lake and 2 miles back. Sierra did very well with a normal amount of encouragement/lots of songs and Name That Tune (Neal's hummed songs will soon be out in a store near you). She was tuckered out by the end and slept in the car. Today we are trying to get her to feel well enough to (distract her) go to the state fair. She had a hard night of really bad headaches and 100 degree fever. She really wants to save her energy for the car and school bus races tonight!

Happy Mother's Day to everyone out there (Tuesday when the kids go back to school!). I must go, Chris reminds me I must focus on the lunch that is cooking...gotta go.

Love, Team Sierra

Thursday:What is that loud, boisterous Karoake singing in the background? That must be Sierra and Chris singing it up! Today was a normal summer day--I could get used to this...playmates of all ages come and go, toys everywhere, forts inside-forts outside, brownies baking inside, raspberry sorbet churning on the back patio, kids coming, kids going, blueberry picking, Polly playing, Lego playing, train building and reconstruction, lots of puppy games, and a finale of fun loving Karoake!!!

We just got back from a 3 day trip to Alta Crystal Resort at Mt. Rainier. We can't wait to go back. We definitely are going back for a week of Crystal Mt. skiing. We were guaranteed fun by the owners and did they deliver. What a great family place--swimming, hottubbing, badminton,trails, horseshoes, games,ping pong, bon fires/S'mores, oh, and let's not forget hiking up at Sunrise/Mt. Rainier. The owners were so incredibly nice and understanding about the rescheduling we had to do to fit with Sierra's optimal times. We spotted and documented 15 different wildflowers! What a pretty show...We will have pics on the site real soon.

Oh, now I hear Neal singing "Hey. Jude" with Sierra, I think I need to go join the fun, before Chemo Day arrives tomorrow.

Thanks for being here! Love, Team Sierra



Saturday, August 23, 2003: Wow, has another week flown by already? We are living on the high from last week--her tumor has shruck to nothing, as far as the doc. can see! We are so thankful for all the prayers, thoughts and love that has been sent our way! We pray for her perfect health and long life every day!!

You are wondering how Sierra is doing. As you can see from our pictures we took a 3 day mini-vacation last weekend to Chuckanut Drive, Bellingham and Mt. Baker. Sea to Sky! All I can say is "AWESOME". Neal and I have gone up to Mt. Baker and Shuksan to hike and camp and the road to get close up was always snowed in. Just a few weeks ago, the road was snowed in. We lucked out going this late in the summer. By the way, my sis, Cathie has climbed both of those incredible mountains! The day after our beach visit, Sierra woke up with a 99 degree temp, so we stayed low in the hotel room, then it got to 100 and she was feeling well enough to go see a movie, but not hike in the mountains. While in the movie it hit 102, so of coarse, we had to take her to the hospital as a precaution. She spikes a fever on the weekends (due to the Vincristine). We had already scoped out the route on Friday "just in case." When you have a kid with cancer, you choose your vacations based on the size of the hospital! And unlike other tourists, you MapQuest the hospitals,and map out a route before seeing the sights. Sierra has a newfound love and appreciation for Children's Hospital. B'ham hospital is big and nice, but they don't see too many kids with ports. Nurse: "So what size needle does she take, look in here and pick one that looks familiar, o.K?" Luckily we picked the right one! After being accessed, Sierra slept the next few hours and then we left. She woke up the next day with normal temp. and we were off to Mt. Baker (1 hour away).

Mt. Baker is called the Sleeping Giant. It is an active volcano, though it only blows every 60,000 years (which is often in volcano talk). The 2 mountains sit side by side with a thing "volcanic talon" ridge separating them. Mt. Shuksan is the little sister, that Mt. Baker is very jealous of. Mt. Shuksan gets all the beautiful pictures painted of her, everyone loves to hang out and admire Shuksan's incredible beauty. Mt. Baker looms over your shoulder blowing steam, all mighty and powerful as you admire Shuksan "Pay attention to me, now!". Baker reminds you that she is the one that everyone can see for hundreds of miles, as far away as Canada.

On Monday, Sierra started Drama Camp at CSSV (my "old" employer)--she had a fantastic time, as you can imagine! She called it Acting Class --"I learned this in Acting Class..." Sierra attended the WHOLE camp-every minute of it. We am so proud of her. The class put on a great performance yesterday for the families. Sierra remembered all of her lines, and we could see her mouthing everyone elses lines, too. Just like in her ballet recitals, she cued people on if they forgot their line or what to do. She was in her element. Though she does remind us that this school year "I may not have time in my busy schedule to take acting, I am already taking Tae Kwon Do AND Ballet."

Uncle Stuart is here visiting from Helena, MT(he had a work related training in the next town). We have been able to hang out with him some of the evenings. He and Neal hooked up with the Ski Guys Group to play Poker and talk skiing. Stuart will be here this weekend to play.

PS We leave for Mt. Rainier for 3 days on Monday :)

Thanks for checking up on our special girl!
Love, Team Sierra

Friday, August 15,2003

Friday, August 15: BIG NEWS FLASH, everyone!! Sierra had a CT scan and MRI yesterday and they look TERRIFIC! The doctor said she is "CR" (completely responsive to treatment). All the radiation and chemo has shrunk that rhabdo down to nothing! He drew a picture of her old tumor, and then what the scan looked like, and it is just the normal thin muscle now. Her scans are considered "clear." When Sierra heard the news she said, "Oh, good! But do I still have to be in the CHEMO ZONE?" Doctor "Yup, until April", Sierra "Tartar Sauce!"

Sierra had a good week back on chemo. She was about a -7 on a 1-10 (10 being the best). She participated in a Kathrine Bond's writing camp, which she loved, but attended 1/2 of. Chris, who was apprehensive at first, got hooked in after the first 15 minutes and was on a writing high the whole week. It was an amazing and confidence building experience for him. I went with the kids on Tuesday when they went looking for stories at Tolt McDonald Park. Wow! what an experience with those kids, Katherine has incredible talent for helping kids access their creative brain. The kids were making up stories left and "write"!!

Sierra's had chemo after the scans yesterday. Guess what? Her accessing and deaccessing were a piece of cake!! She was anxious, then when it was all done, she sobbed "thank you, thank you" to the nurses, because she couldn't believe it didn't hurt. "I love my port", she rejoiced!

We are off to Bellingham and Mt. Baker today. Neal is taking the day off today. Wednesday night he returned from a 2 day trip in NYC. On his way out of town (NYC), he must have turned the light switch off "Oh, that's what that switch was for!" I am SO SO thankful that he got home in time to go to the scans with Sierra and me, he escaped the MESS by the skin of his teeth. Being in the financial and insurance business, he was very busy yesterday on his blackberry and laptop at every second that he wasn't playing Polly Pockets with Sierra at the hospital. If only his business cohorts knew that when he was talking to them he had Polly and her airplane on his lap! Quite the picture! That is a small example of what a committed and loving father and husband Neal is.

Off to a great weekend...you have a great weekend.

Love, Team Sierra

Saturday, Aug.9: Sierra has had a great week, no news from us, is good news! She really enjoys being on a break! She has so much energy. This week she's had 2 playdates, gone to a friend's house, gone swimming, visited the library to stock up,and played golf (! and she is GOOD). After her eye doctor checkup (opthamologist/surgeon guy) on Thursday, we took her to the Bellevue Square Mall. I took advantage of her high energy level. She was given a Nordstrom gift card (another Random Act of Kindness) and so she had mad money to buy what she wanted (that she could wear to school-I had to veto the $30 crenalum slip "for dressup,MOM"). She had so much fun trying on clothes and shoes. She bought jeans and leather boots, and still has more money left over. She, of coarse, warmed the hearts of the salespeople that she met. Everyone was so nice to her, and we met new friends along the way (in true Sierra style!). The shoe department guys even pulled out their instant camera and took a picture of her signing her own credit slip. She is a big girl now, I guess. Then after that she went to check on Photazz (the photo studio). Her black and white sepia picture was displayed at the desk and on the wall! After this she stumbled into Limited Too and met a great salesperson who helped her get her first 2 piece bathing suit and gymnastics outfit. She was spending her "radiation money" at this point. She also ended up with a Hello Kitty backpack. She felt like a million dollars walking around in her new boots and jeans! She even got a "Hi, Sweetheart!" from a 20 something guy. She was astonished,she said with a HUGE smile "He said hi to me even though he was with his girlfriend-WOW!" So we had a teenage experience together, it was great fun and unlike a teenager, she wanted to be with me. I am grateful for every happy time like this. That night we all went out for dinner and had such a fun time telling jokes and Sierra was doing a little acting out of scenes. It was great fun. So we got a few looks-you know what? I don't care-we we're living life!

The eye doctor said her eye looked good and the redness is from radiation. He wrote out names of eye drops and cream to put on her eye. We see him again in a month. While we were waiting in the exam room, the four of us were cutting up so much. Neal put on his goofy Mr. Bean act and we were all laughing so hard we were crying. The doc. walked in in the middle and said we were having too much fun for a doctor's office.

That night I went to bed thankful we have had 2 weeks of having lots of fun, the next day we'd start chemo again.

Friday morning bright and early all four of us got up and drove to Children's for Sierra's treatment. Her port access went well, she didn't cry on entry (just on deaccess). She is moving in the right direction.

Sierra played a round of 9 hole golf after Chemo and all was right with the world. The ickiness of the chemo has not set in yet. Her energy has been zapped this morning, but her stomach has not bothered her so far. We will keep you posted.

Love, Team Sierra



Monday, August 4: Is it August already? Sierra is still on chemo break!! She is enjoying her life again, physically and emotionally. We are enjoying normal things again: sibling quabbles, toys left in every room, lots of laughter,singing, being spontaneous(!), doing creative projects, telling stories, and being ACTIVE. You don't know what you miss about being "normal" until it is taken away, so therefore, I don't care that the toys are left in the living room-that means Sierra has been well enough to PLAY in the living room--so I leave the toys out as a reminder--it is a little different perspective in the housekeeping routine :) Right this second Sierra is taking a mini break from a workout video we are doing. She loves doing aerobics and exercising. She is determined to exercise and get strong before the break is over. She prides herself on being so strong.

It has been so hot and sunny here, we have done lots of outdoor activities. Today there is a break in the weather (a welcome relief) so we are working out inside. Over the weekend, I took the kids to Olympia to see Christina (a school friend who just moved) and her family. Sierra was so excited to see Christina. We took the kids to the Hands On Museum (our favorite!). After dinner Christina's family showed us around town and took us to a park, on a hike and down to the water to enjoy the beginning of the sunset. We spent the night at the Red Lion, swam late at night (and star gazed) and for 3 hours the next day. Then off to Puyallup to see Joan and her family. I've known Joan longer than Neal. We had fun catching up and the kids played all day on their trampoline, in forts and hung out with their chickens. Pete served up a super BBQ for us. On Sunday, Neal took the kids fishing. Well, I must get back to my "normal" life breaking up a sibling squabble...ah, yes, back to normal. Next weekend- Mt. Rainier for 3 days!!

Love, Team Sierra

Monday, July 28: Sierra has been feeling like her normal self: going on bike rides, making shrinky dinks, making fairies, drawing, writing stories and dancing and singing to Elvis with Brother Chris. She is doing the normal 7 year old thing, thank goodness. She says "Hello and Thank You!" to everyone! I don't think she gets the idea that we can write in one spot and it is broadcast to lots and lots of people. (It took me awhile to "get it"). We will take more pictures of her art and her projects so you can see what she is up to. We are enjoying our "old life" for just a tiny bit with the completion of radiation and this "break" from chemo. It is such a joy to see the children busying themselves with projects, happily singing "...for I can't help falling in love with you..."

Love, Team Fuller

Sat, July 26, 2003

Sat., July 26, 2003: Very quick update to tell you that Sierra is feeling EXTREMELY WELL and I do not have time to update the website because I must go PLAY POLLY POCKETS and PLAY DRESS UP and whatever else she has in store for me to do right now. She DID NOT have chemo yesterday (which explains the high spirits!). The doctors decided to have her hold off so there will be less side effects from the radiation. She had a nice dinner on Thursday (which she fell asleep at)with some school friends (our "adopted family") and a HUGE celebration at UWA hospital on Friday. We will describe more and send out pictures as soon as Neal and Chris get back from Mariners game! Anyway, my cheerful, energetic, spirited, playful and joyous daughter is calling for me and I MUST GO PLAY!! I know you understand!! :) :) :)

PS note email addresses for Maria and Chris at the bottom of the page.

Sat, July 26, 2003

Sat., July 26, 2003: Very quick update to tell you that Sierra is feeling EXTREMELY WELL and I do not have time to update the website because I must go PLAY POLLY POCKETS and PLAY DRESS UP and whatever else she has in store for me to do right now. She DID NOT have chemo yesterday (which explains the high spirits!). The doctors decided to have her hold off so there will be less side effects from the radiation. She had a nice dinner on Thursday (which she fell asleep at)with some school friends (our "adopted family") and a HUGE celebration at UWA hospital on Friday. We will describe more and send out pictures as soon as Neal and Chris get back from Mariners game! Anyway, my cheerful, energetic, spirited, playful and joyous daughter is calling for me and I MUST GO PLAY!! I know you understand!! :) :) :)
PS note email addresses for Maria and Chris at the bottom of the page.

Thurs, July 24: Today the kids declared today "Thankful Thursday." Count your blessings...Sierra has one more day of radiation!!! The kids shopped for party treats and "get ups" to wear tomorrow. She can't wait to celebrate! Stay tuned for the minute-by-minute description of Sierra's day and pictures. She contemplated very hard on some special awards that she will be giving out. Although it has been difficult and a very long journey for her she has learned she can get past this. Today a volunteer, Kathleen, showed the kids how to make fancy origami boxes. Boy, did they crank on the origami! They made several (and wrote messages on them) to give to Helen, whose last day was today! She was very touched. In the car the kids talked about the "ACTIVE KINDNESS" that Kathleen shared with them. Another "ACTIVE KINDNESS": A woman who we see every day finished her treatment today and slipped Sierra a card (that Sierra later opened and found a Nordstrom gift card). Her smiles and acknowledgement of Sierra has made radiation much easier to bear. She wore diamond studded sandels today, and she is always dressed up. I would look at her and think "I wish I could look like her and I wish Sierra felt as well as she looks!"

So many people are out there rooting for Sierra and we send out a BIG HUG and KISS to all!!

Love, Team Sierra

Tuesday, July 22: All Points Bulletin: Sierra will finish radiation this Friday! She needs to be CONGRATULATED for her bravery and courage. We will be taking party treats to UWA and Children's Hospital to spread the celebration around. Two radiation machines were down yesterday, so they told her not to come in! What a treat, because Neal was working from home so we had some extra unexpected family time! Other than playing games, and seeing the silly movie "Johnny English", the kids got to swim at the Barrett's pool. She is thankful now for her "Polly" (internal port). Today, I took the kids to our local public pool. We swam for 2 hours. Chris was so good at carting around the huge golf umbrella over Sierra to and from the pool, and scooting her chair around to get in the shade during "rest time." She swam for nearly the full 2 hours. Not once did she complain about being tired. She is getting back to her normal energetic self! For lunch she wanted Chicken McNuggets (pre-chemo, I would cringe...now, I'm like "you want to eat?, OK you can eat anything, let's go!". She ate all her McNuggets and a a carton of milk! I am hoping that during her chemo break she can gain weight. She does have this Friday's treatment (of the dreaded "A" medicine--makes her sick) looming over our head. I hope she won't be nauseated for too long and she can bounce back and begin her "chemo break" ASAP.

That's all for now. :)


Sat., July 19, 2003 (Happy Birthday, Grandma/Mom/Edythe): Sierra is doing well this weekend. She has had a rough week because, for some reason she has been nauseated. We have lived on a desert island. We go to UWA in the a.m. then immediately return home for her to lay down. The doctors say the nausea is not the chemo (ha ha-I think I would be nauseated), and that it must be constipation. Poor thing, her most private bodily functions are now discussed routinely in front of everyone. At least now she is not shy about letting us know!! Enough of that.

She is just getting her appetite back and we are thankful for that! She asks for teriyaki, salad, nachos (with meat, potato chips. Some say she craves what she needs (I guess she needs iron,fat and B vitamins!!). She loves the fresh carrots from our garden-she eats them like a bunny. Everything is coming up in the garden: peas, carrots, cucumbers, peppers, and kale!!

She went to a friend's party and ran through the sprinkler without worry! It was great for her to see school friends.

Neal took the kids to our town's outdoor concert on Wednesday.

On Thursday, Mrs. Taylor told her that she could make a special visit to school to meet her new teacher, "Mr. A". That was so much fun! She was amazed at the room--there is a couch in the middle of the room! She dove in helping him sort all kinds of things. It will be a very exciting year for her--she will have lots to look forward to. She misses school and her school friends, so I know she is anxious for school to start. I think she misses the normalcy and routine. To her summer has meant endless visits to UWA. Hopefully, this experience won't discourage her from wanting to go to UWA (my graduate alma mater).

On the last day of my parents' visit, we were walking through the hall of the UWA hospital and we stumbled on a harpist playing angelic music. (you must know that Sierra has been BOTHERING me to sign her up for harp lessons-like they are a dime a dozen?!). As we watched Sierra soak in the healing music, my mom pointed out that it "takes her mind away, and for a moment makes her forget." Sierra is so intuitive to what she REALLY likes and she lets her heart take her there. After she listened, the harpist motioned her over to take a mini lesson. Within a few minutes Sierra was playing Twinkle Twinkle Little Star to an audience. I was so proud of her. It truly was a Kodak moment. Of all days I did not have my camera--well you can "get the picture." The harpist gave me her card and the names of 2 other harp teachers--now I have something to go on and can actually follow through. She is also interested in horseback lessons, because she reminds me with expression of course, that she has never in her LIFE brushed a horse or put horseshoes on one, and she NEEDS to do that!

Today is Sandblast in town (an arts and crafts festival and HUGE sand sculpturing on the local beach). I took Chris down early to get started on his big hole, Sierra and Neal came down later. Sierra had the energy to carve, dig, play and lay in the sand for a couple of hours! Just like every summer for the last 5 years--we wouldn't miss it!

Happy Birthday to you tomorrow (Sunday, July 20), Grandpa Broome!!!

We are looking forward to Sierra's chemo break which starts next Friday, July 25. She will have three weeks OFF! We are planning a trip to Leavenworth to fish and swim (quilt?) and to Mt. Rainier to hike!!

Love to all!!
From Team Sierra


Sunday: Sierra has had a restful few days at home after coming home from the hospital on Thursday. She had surgery to place a new port and then had her Chemotherapy treatment on Thursday, which made her stomach upset most of the weekend (surgery and vincristine both do a number on the digestive system!). She should begin feeling better tomorrow based on past experience. We keep telling her that it will get better (so it better!) She is learning to cope during the hardest parts. She is breathing through the discomfort, she rubs her belly, we rub her feet and belly. Last night we were up walking around with her, because sometimes walking and moving helps. No one should have to go through this, I tell you. If we could be in her shoes we would at the drop of a hat.

Sierra has been distracted by all the toys, games, books and Polly Pockets that people have sent over. On Saturday, Neal and Grandpa spent the day with Sierra. Grandpa and Sierra did stuff, then when her belly hurt she would call for "Dad." Grandpa enjoyed being able to just hang out with her. My brother, Gordon, came up on the train from Portland (for work) and was here about 24 hours. Sierra was so happy to have Uncle Gordy here. We realize that although sometimes our family visits are short (like when we went to DC for Cat's wedding), they can still fill our soul!! Gordon brought her a gondola from Italy and told her about Venice. He thought it was rather cool that she did her Heritage Project on Italy. Gordon, Chris, Grandma and I went on a Lake Washington boat ride that left from the Kirkland Marina. Gordon used to live here for 6 months and when he comes to town he knows what he would like to do (if it fits in)--we did a weeks worth of adventure in one day! After the boat ride, we walked the Kirkland Arts Festival (we had gone the night before also after picking up Chris from his Sailing Class). Then we headed to the International District and took in their Summer Festival. Mom, always on the hunt for good cherries, picked up a bunch of cherries that kept us fed all day. We had two hours left before Gordon's train left so we "hopped" over to West Seattle, planted cherry trees at the Seattle look out, then strolled along the beach at Alki. Of coarse, they were having an art festival, too! Chris got to go on the big slide, and see an sand artist sculpt a sea goddess. Chris can't wait for me to take him back and rent sand bikes. The sun was out, the breeze was blowing, the Olympics were showing off and Seattle was especially breathtaking. Unfortunately, our Cinderella adventure ended at the train station at 5:24, with one minute to spare! Chris, Grandma and I got back home in time to eat the grilled salmon that the boys had put on for us. What a break from my normal daily schedule. Being out of doors and taking in the Seattle sights that I love so much rejuvenated me... now if I can get Neal on the golf course to relax. He is scheduled for a few Mariners games coming up which will be a much needed breather for him.

Thurs. July 10, 2003 4:41 PM CDT

Sierra came home today!! Though she likes to be back to the comforts of home, she does not mind the hospital. She says she will miss the doctors, especially "Boots" "who understands me and knows where it hurts and not to touch where it hurts". Children's is great in providing lots of different activities while the children are laid up, granted I have had to push for many of them and be proactive. We are especially thankful for Rosanne, the Play Therapist.

Sierra DID get up the gumpsion to go to Radiation this a.m. I am so proud of her, bec. she could have played the "I am in too much pain" card and put up a huge fight. (Mom reminds me that she DID put up a fight and was bribed a total of $7.00, plus $1.00 from the doctor that I slipped in). She likes those Crispies. After tomorrow she will be in the single digits!! We have seen Helen and that helps keep a normal routine. They keep each other motivated. The woman that goes before Sierra dropped off a big bag of goodies for her with dolls, slinky, coloring books,etc. When she returned to the hospital, Shannon, the nurse had made a big sign of congratulations. She knows that people love her and are supporting her. She smiles every once in awhile and says "ALOT of people love me!"
She is right!!

Sierra has gotten doctor's orders that she can swim in one week--and boy will she be swimming!! :D :D :D :D

After being gone for 9 days...we greatly appreciate clean clothes,our own bed, bathroom, real/live/healthy food, fresh and clean air, live flowers, friends, freshly picked peas and blueberries from the garden, the night sounds of only frogs and silence, fragrant smells and most importantly -- BEING BACK TOGETHER AS A FAMILY!!


Wednesday, July 9: Sierra had surgery today and is now fitted with an internal Port a Cath!! Yippee!! She is now in Room 105 A (she is well enough to be off the Oncology floor). She had such a great time this morning (after radiation, that is). Grandma and Grandpa pulled her around in a wagon, while she snuggled with her favorite blanket, Fluppy and Karen. (Pics to follow this weekend). She just wanted to rest up before the surgery. Though she had a restless night, she began to be excited as the moment of surgery approached. She met up with the clowns in the elevator (complete with Elevator Music--a clown playing a weak ukelele, natural goofiness and giddiness). Once Grandma rolled her into the surgery starting area, she got a dose of manmade goofiness. She was glad to be getting her iv out and port in (Polly, as she calls it). After a long 1 and 1/2 hours of being gone from us, she came out sleepy, but in good spirits. She was greeted in her room by her former (first) preschool teacher of 2-1/2 years, Christine. What a great delight to see her. The visit was a groggy one for Sierra. Nevertheless, it was great to have "someone from the OUTSIDE" there by her (our) side! Sierra is doing well tonight. She has a slight sore throat (but not as bad as last surgery in May). She will be on Tylenol and we hope she will be up to getting radiation visit #11 over with tomorrow. The radiation is working--her eye is red and puffy, that is what the doctors want to see. That way they know the radiation is close to the surface not farther back in the (yikes) brain. Tonight she saw her attending doctor who said she probably will go home tomorrow, her resident ("Boots", a young hip boy doc) and Dr. Tina (her young hip girl doc). They all agreed that she could go home tomorrow if she is up to it. We will not push her, though. Stay tuned.

Monday, July 7, 2003: Sierra had a great day at the hospital. She does not complain about her IV :) She and Aunt Cathie had a pajama party/ sleepover at "Sierra's Condo." She has been in a quad room, but has had the whole "pad" to herself for 3 days! We lucked out. They had a great night together. Cathie has got the routine down. It has been so nice to have Cathie at the hospital to put to good work her creative Occupational Therapy skills. "Drink to the count of ten to power the TV (or art,etc)". She has been off the IV fluids for nearly 2 days bec. she can drink enough from her water bottle. She only has antibiotics at 8am, 4pm and midnight for a 1 hour drip. We keep her on schedule. After the sleepover was over, we went to radiation. We didn't see Helen because she only goes T-F. Back at the "Condo" we met back up with Grandma and Grandpa. Then the show started: The Infamous Children's Hospital Clowns arrived to put on a full blown slapstick routine that Grandpa stumbled into. He found himself performing a 3 Stooges routine with the goofy clowns. We were all laughting until we were crying!! It was outrageous! After they performed a CAT scan (with a cat mask)and clown nose transplant surgery on Sierra, Sierra spent the afternoon performing them on me and showing the nurses how to do one. Pictures will follow when Neal gets back from spending the night tonight. Later in the afternoon, Sierra played in the Oncology Playroom with other girls and the Volunteer (who is a Kindergarten teacher--so I of coarse picked her brain about needs and how to get more arts and crafts supplies). The Art Therapist was directed to work with Sierra. The volunteer and therapist were amazed at her focus and artistic abilities. She produced paintings, stickers, creatures and a 2 foot tall Rapunzel tower of construction paper complete with a finger puppet. When they left, the Play Therapist came in and worked alone with her "on stuff." They will continue tomorrow. It is their own private time alone (without mom or dad). We have to let her have her private time! After all this activity she was TIRED. She went back and rested and got her meds.

The doctors came in and said her rash looks "beautiful." She will continue with the meds, and plan for port-a-cath surgery Friday (if the doc. can get it arranged).

Sierra will be the first to tell you that she only has 13 more days of radiation to go!! She is almost into single digits now!! (We don't say half way-because she feels like it is more than half way). As of today, her Estimated Day of Finishing Radiation (EDFR) is Friday, July 25. If she gets her port surgery on Friday and has to miss radiation the EDFR is moved to Monday, July 28. We will keep you posted. What she needs now are notes and cards of encouragement and cheerleading to get her through the last 13 sessions. Her eye is getting sunburned. It itches, is red, and she is self conscious about it.

Chris started Sailing Camp today and has met a friend. Grandma and Grandpa have been charged with "worrying about getting him ready and there and back on time." I am thankful they are doing this, so I don't have to worry about Chris. He is very well taken care of. My sister leaves tomorrow, then my brother comes in on Friday (a side trip from a business trip in Portland). Then parents leave next Monday. So right now we are spoiled. I feel like I will be swinging from a trapeze next week, but can't think about that right now. We have to get Sierra better and out of the hospital first. One day (minute) at a time!!
Love to all!!

Sunday, July 6, 2003: Sierra continues to recover from her infection. She is on her third different antibiotic, but only because the doctors have learned a little bit more about the bugs each day (from the cultures they take of her blood each day). The red spot near where her line was, is not as red and the swelling has gone down. She hasn't had a fever and has been just as spirited as ever.

The doctors indicate she will need to stay in the hospital for the week to continue the IV antibiotics and make sure the infection is completely cleared. In the meantime, she would welcome any and all visitors. Visiting hours are 10 a.m. to 8 p.m., but better for her during the day from 10 to 2 because of the schedule of her IV's. Her counts are low, so no one who has sniffles.

Today she had lunch outside with her parents and had a great time playing Chutes and Ladders. Without even trying, she won! She has also been doing a lot of reading, playing Polly Pockets and going for wheelchair rides. We'll update you as we know more, but for now she will continue radiation daily all week and continue on the IV 3 times a day. Possibly late in the week, she may go in for surgery to place a port (underskin, I can swim!) to replace the line.

Thanks to all for your continued thoughts and prayers.

New photos of Sierra's Artwork in the hospital and Chris's 4th of July parade where he decorated his bike (including smoke bombs on the handlebars and frame).

Friday, July 4, 2003 7:47 PM CDT

Hi....Sierra is feeling great and doing fine. she had a "surgical procedure" where they took her line out this morning. Her hand is a little sore where they put in the new IV line, but she is in great spirits. After she battles the infection, we'll consider surgery to get a port place (under the skin). She will be in the hospital for a week on IV antibiotics, as she has a fairly rare bug infecting her blood. Chris brought her a lot of 4th of July decorations this morning and then went home and was in the 4th of July parade in our neighborhood. Maria is spending the night tonight in the hospital with Sierra and we are grateful to have Maria's parents and sister Cathie here to visit/help...not the visit they planned, but none of this is planned. Chris and I are off on a special father-son date to the car races (many races followed by a demolition derby followed by fireworks). Will update tomorrow. They still don't know which of 65 or so different types of this family of bacteria it is, but it is not staph and some of the more familiar ones.

Thurs. July 3, 2003 2:35 PM CDT

Thursday, July 3: Hello, Maria here. Neal is at the hospital tonight (Room 325 B) with our darling, Sierra. I am at home with Chris (while he excitedly decorates his bike for the 4th of July parade!). Sierra is chipper and active, even though she has an infection in her line. We have a name for the bug and they know what antibiotics to give her. She has been in the best care with the Infectious Disease Experts. She will have her central line removed tomorrow morning-on 4th of July. She will then have an IV put into her hand for the antiobiotic drip. The bad news is that she will have to stay in the hospital as long as she has the infection (and the IV)--which could be up to 10 days. The good news for her is that the infection is on the road to being cleared up and she is one more (baby) step closer to getting a "Port-So-You Can-Swim!" Say it all in one breath with a big smile on your face and act very excited :) She will get the Port at the end of the antibiotics, when the infection heals.
Aside from a bunch of doctors poking at her line, she had a great day. She got up, ate and took a walk around the unit (hatless). She went to radiation and ran all over the place today! (14 more days left). She saw Helen and they chatted and hugged. We will pick Helen up over the weekend to celebrate the 4th, somewhere, somehow!! After radiation, Sierra had a lunch date with mom and dad. Then back to Childrens. Her 1st grade teacher, Mrs. Taylor, came and brought origami that they worked on together. While I was at a Watsu pool session for 25 min. and Neal was working on a report for work, Mrs. Taylor took Sierra to the Play Room for painting and a weaving class. Back on the floor they continued to play and talk while Neal and I spoke to the Oncologist about the procedures. Tonight a guitarist is coming to Childrens. Hopefully, Sierra (and Neal) will feel up to it. Last night she saw a juggler and had a blast!! It was great to watch her laugh so much. We like to keep the humor up, you know. Chris picked out lots of 4th of July decorations, gifts, body decorations and party favors to take to Sierra tomorrow morning. He said he needed to get up early tomorrow to paint his hair red, white and blue. He is going to see if he can paint Sierra's head in patriotic style.

We are thankful that Sierra is in such good hands and that everyone is supporting us (propping us up) through out this. We can't wait for my parents and Cathie to come tomorrow! Again, we are reminded that family, friends and love is the most important gift, and so is TODAY. That is why it is called the PRESENT.

Wed. July 2: Just back from Children's. Sierra is feeling fine and Maria is there overnight tonight. The blood culture taken yesterday showed a blood infection which probably came from her hickman line, so she is on an IV antibiotic drip. But she is alert and snappy as ever. We hope she'll be allowed out by the 4th. They will do a culture every day to see what progress she makes. We'll update as we know more.

Chris now has his own e-mail and loves getting e-mail: C2itfuller@yahoo.com
He is also developing a webpage, with pictures of Julie and Mo (our cats).

Quick update. It is Wednesday morning, we just got a call from the nurse, Sierra's cultures are positive for a line infection (thank goodness we took her in yesterday). She will be admitted to Children's Hospital today (phone number is below). She will be there 3 days. :( Luckily, my parents come on 4th of July. She will be fine!

Tues. Happy July!! Sierra has lifted the spirits of the radiation waiting room! Aunt Cathie has crowned her "Chairperson of the Spirit Committee." Today we rolled around the corner into the waiting room and Sierra saw Helen and squealed the sounds of delight, they embraced and caught up on how they were doing. After chatting for a short minute, they each went back to their respective rooms. Sierra was excited that she was getting treatment at exactly the same time Helen was! How cool is that?! (looking for silver linings here) Sierra was still in her room when Helen came out, so I met up with her and took her over to "Sierra's TV" where I watch Sierra (and I keep a close eye on the technicians as well). Helen thought that was neat how I can watch her. We could here the story on tape going. Sierra just gets into listening to the story and it distracts her. While Helen went to her second treatment in the next room, Sierra popped out. We went down the hall to the cafeteria and loaded up on rice, 3 kinds of soup, Cheerios and salad. I told Sierra we were going bring a surprise picnic to Helen when she got out of her treatment. We were to pretend there was grass, trees, birds, and a stream. Boy was Helen happy and surprised when she saw Sierra and then the lunch. We had a nice time having our lunch together, making the most of life in that little corner of the waiting room. As as far I could tell, there were birds chirping and a babbling brook going by. Spririts were raised and all was well.

Next, we went to Children's to get Sierra's line looked at. She has such a sensitivity (a red spot near her line), she may have an infection, so she was put on antibiotics for 10 days. We are having discussions with the doctors about when Sierra can go in and have her external line removed and have an internal Port a Cath put in. Then we wouldn't have to deal with rashes and infections (or the nightly maintenance).

Chris has been working hard on designing his own website, we will have information on that soon. Chris's new very own email is:
c2itfuller@yahoo.com. He would LOVE mail!

Week of June 23:
Sierra enjoyed the first week of summer vacation. Our friend Herb has been tying “Sierra Stone Flies” with her hair. They are beautiful! He has made an even dozen. She has gone over to his house to get a lesson on how to tie flies. She is deciding what to do with the flies. I have suggested selling “limited edition” flies and purchasing helpful things for the hospital (books, tapes, resources for other children), she also wants to install a wishing well somewhere close by! I think that is a great idea!! She is making lemonade with all the lemons!

She had daily radiation treatment, these went well. One day her Grandma Fuller (see photo) came along to see how it worked. She got to see Sierra’s wheelchair and breakfast routine. Mrs. Taylor, her teacher (see photo), accompanied her Friday during her 3 hour clinic visit for treatment. Mrs. Taylor played Clue and helped her with crossword puzzles. She entertained Sierra while I discussed things with the doctors. Sierra hugged Mrs. Taylor at one point and said she wanted to be a teacher... (she already is). Sierra has made some new friends as well during her “new routine.”

At radiation on Thursday Sierra came skipping out of the treatment room into the waiting room . She had Karen, her doll and Fluppy, her dog who go everywhere with her (even were in surgery); her book on tape; lavender spray; and her blanket her Great Aunt Doris made her when she was a baby). She dropped off the tape, and hopped back in her wheelchair. She still wants to ride for fun. She zipped around the waiting room and a nice woman (who was also in a wheelchair) named Helen said “You are better at that than I am.” Sierra wheeled over and they struck up a conversation about how long they have to go ( the common ice breaker line). Sierra said with a loud excitement “Only 19 more days!”

Helen was going in for her first treatment. I could tell she was nervous. Sierra asked Helen what was wrong with her. It turns out she has cancer near her eye too (though hers is in her sinuses as well) and has to wear a mask during radiation as well. They commiserated about having to wear the tight mask. I asked Sierra what advise she might have for Helen about getting through it (Sierra’s biggest complaint has been the smell). Sierra told her to think of good things like strawberries, ice cream, pancakes, and real yummy things! Helen was quite impressed with Sierra’s wisdom and bravery. I also told her that Sierra got used to the whole thing in about 3 days. Helen was interested how she knew she had a tumor in her eye. Sierra explained that one day at recess her eye had a headache and her teacher brought her in and called mom. She told her that it was Rhabdomyosarcoma. Then she began itching her bandage and we explained what was going on there (rash). Helen looked straight at Sierra with such compassion and love, and said “You have been through a lot and you are so strong. If you can get through this, then I can too!” In the meantime, Sierra was digging through my wallet collecting change. She came up with about 23 cents in pennies and a few nickels. She rolled over to Helen and gave her the money. Helen said she couldn’t accept the money, she would give it back. Sierra said to keep it, then Helen wanted to give it to me and I said that “Sierra will tell you why it is special money”. Sierra told her that when she first started (and was scared) “that a lady sitting right there in that chair gave me 2 one dollar bills, it was ACTIVE KINDNESS, so I gave another lady at the ice cream store a BIG tip, and now I am giving you money to make you feel better. You can give the money to someone else and do a ACTIVE KINDNESS.” Helen was obviously touched. She said she knew exactly who she could give this special healing money too. She turned and pointed to a man a few chairs over and she said that he was from Texas and he had cancer, too. She passed the money down and when the man received the money Helen explained the special healing powers the money had. At this point, I was very teary eyed and I looked around the room and everyone else had there attention on this precious and most powerful interaction between 2 strong women (not many dry eyes). By the way, I thought Helen to be about 65 or 70, she later told me she was 81. She is up here from Los Angeles and is staying at a hotel. Her radiation goes for exactly the same length of time (Sierra goes 2 days longer). I tell you there will a BIG party at the end of this “treatment”.

The next day we looked for Helen. She was coming down the hall as we were leaving. See Photo. The two were absorbed in conversation about how they need each other to get through this. Each have helped the other (and myself). Helen asked Sierra if she would like or feel as though she needed another grandmother (not to replace, of course). Sierra said she would like that and Sierra said “That would make me feel safe.” A moment later: “When can we have a playdate?!” Wise words from a young one. We exchanged details (radiation times, phone numbers) and promised to keep in touch and see each other.

We are going to visit and bring dinner to Helen today at her hotel. I have told her some of my ideas for treatment days (I have to show her around). She is staying near our old house in Seattle, so I can’t wait to take her and Sierra to Carkeek Park and other places that are good for the soul.

Thanks to everyone for your support. Sierra seems to be having a better time with the treatment so far this weekend. She has gone on a bike ride (with her brother Chris and Dad), visited garage sales, went for ice cream, and had KA-BOB’s (shish-ke-bobs courtesy of a friend). Chris went Bowling at a friend’s birthday and got five spares! He also built an incredible lego dragster that really runs. He has been reading Harry Potter and playing motorcycles on the X-box, when he isn’t busy helping (like washing both our cars yesterday!). Grandma & Grandpa Fuller have been visiting and helping us out a lot. Have a wonderful week.

Tues. , June 24, 2003 6:12 PM CDT

Tues., June 24: (day 4 of radiation) Sierra is doing great. I normally have to bribe her with a wheelchair ride (and goofy driving, too) through the hospital just to get her to radiation. But not today...she skipped all the way to treatment, and "practiced" her running in the halls. (Running Club starts next week and she is READY!) When we got to the radiology room, she was armed with Karen, Fluppy, her blanket, lavender spray and her book on tape. she eagerly jumped on the table,and started listening to her new book on tape: Ramona The Pest. The guys that look out for her are named Kim and Robert. They let me dote on her and get her settled in, then I leave the room and watch her on TV at their desk. They are so nice and friendly and Sierra is becoming quick friends with them. She is not in there very long, maybe ten minutes at the most. I think most of the minutes are spent lining her up. She came skipping out of the treatment room, so happy and joyous!! She was so cute showing me how far she got on the book. She has tomorrow's story to look forward to, one more dollar bill and one more big X to mark off on her calendar. Of coarse, since she was hungry I took her down the hall to the cafeteria. The worker went in the back and got out a special little box of Cheerios for her. She was thrilled.

After we got back to Duvall she was still feeling "up" so I took her over to Girl Scout Day Camp for a couple of hours. She had a blast being with the girls! Thank you Girl Scouts for making Sierra feel so welcome! After dinner, she jumped into her bathing suit and ran through the sprinkler with Chris!! Chris had just been at a friend's house playing in boxes of cornstarch. He was making himself a Human OObleck. A perfectly normal summer afternoon!! We are grateful for these times...enjoy the sun NOW!


Monday June 23

Sierra had a predictable short visit to the hospital last night because she hit 101 degrees at 5pm. Whenever that happens we have to take her to Childrens Hospital. It was predictable because, we looked back in our log and we saw that when she had the V treatment the week after the VA she was nauseated and she had a 101 fever for 2 days. She (and we) know the routine by now, so it is not too scary. We come prepared and of course, we ask lots of questions. Since last night her fever is down to normal and she is running around like normal. She played prairie girl with me (grandma fuller made her a bonnet awhile ago and a white priarie dress). She picked mini carrots and radishes for her dolls and stuffed bunnies. You know there is nothing better in the world than freshly pulled carrots!!! After resting for a bit, she had the neighbor, Elizabeth, over to play with her Polly Town that she set up in her room. Since Sierra sleeps in her "Rest Nest" that is set up in the bonus room, her room now is filled with the toys that she is currently playing with. She tells me: "Don't touch that, I made a scene with that---the slippers are the bed for my dolls". Right now she is eagerly listening to Neal reading everyone the latest Harry Potter book. It is amazing how out of all the different books, the kids remember nearly every detail from each one. I hear the little voices pipe up asking "Daddy, Isn't that the Dementor from Azkaban?" We are nearly back to normal.


Sat., June 21: We asked Sierra what she wanted to say to everyone this week, and she said to tell everyone “Thank you thank you so so so so so so so so so much.”

I am learning to type this week. < - - Sierra typed this by herself!

We have some new photos this week, in the photo album.

This was an ok week.! She had a “better” time with the V/A treatment that she gets every four weeks. She wasn’t as nauseated as the last time, but was still sick. She kept the arm bands that help with nausea on 24/7. It’s kind of weird how we actually get excited on the weeks she “only gets one chemo drug” (the V=Vincristine). The week started off with the monthly visit to the eye specialist who did her biopsy. He said her eye had really improved! That night she displayed her heritage project at the school’s Heritage Festival. She was so excited about her poster. In true Sierra style she drew a picture of spaghetti and took a poll of who liked or didn’t like spaghetti. She was proud to serve Biscotti (remember last week I showed her the joys of dunking Biscotti in coffee, now she is hooked, on biscotti that is, not coffee). She was still nauseated from Friday’s treatment but it meant so much for her to be there. She started out, then went home for awhile, and then came back later when feeling a bit better. What a trooper!!

On Wednesday Sierra started radiation treatment. The first day was just an xray to make sure it was all lined up. On Thursday she walked into the room armed with a Toy Story Book on CD to listen to during treatment. On Thursday they had to retake x-rays, and then do the treatment (which I didn’t know was going to happen, so I couldn’t warn her). She unfortunately was in there on the table (with a mask that gets bolted down to the table) for about 20-30 minutes and she war a little teary about that. That was the longest she’d have to be in there for. By Friday, the radiation guy already had Toy Story set up for her, she jumps on the table and says “SSHHH, I’m listening to Toy Story”. She calls this her “nap time.” Kids do adjust remarkably well to new routines. Sierra and I talk often in the car about her new routine and how well she is getting used to all the new things we do, and all the new people we meet. She has gone from the student to teacher mode. She wants to help other kids who “are just starting out.” We talk about the many ways she can help.

Thursday was the last day of school!! Now we don’t have to stress anymore about how many days she has missed. She is reading at the 3rd grade level, so Mrs. Taylor assured me she was doing great. We are so very thankful for the Eagle Rock Multi-Age School support that we have gotten since the very “beginning.” The school teachers, staff, parents and students have been so understanding and friendly towards Sierra. I can’t thank everyone enough for all the support, meals, milk, greens delivery, toys/ gift certificates, games, hat connections, canopy, making lunches for Chris, and the new “Sierra Garden” coordinated by the Denisons. We are so thankful to all the people that showed up 2 weekends in a row to tend to the mowing, weeding, digging, spreading bark and planting new plants for a restorative area for us to put our energy. I can’t tell you how important the yard and garden is now, because it is the ONLY thing we can control!! It is very healing to be able to tend to plants and see them bloom and grow. The kids love to help water, spread dirt, and transplant plants. Boxhill, Farmer’s Daughter, True Value Hardware and Woods Creek Nursery in Monroe all donated plants!

We are very grateful that our friends have spent the endless hours making sure we are taken care of. Our friends and neighbors have been generous in making meals and “looking out for us.” People have been so open and willing to pitch in a the drop of a hat (being a shoulder to cry on, housecleaning, babysitting, driving Chris to school, going to the store). Chris has spent many early mornings at friends’ homes (or they have come here) and we thank you for taking him into your family. It is amazing to see the flood of people out there who have sent journal entries, quilts, letters/cards, gift certificates, toys, flowers, balloons, and books, concerts!! We are working on putting together an actual thank you card for everyone (you’ll probably get it before it is time to send out Christmas cards). Thank you to you all that have been keeping Sierra in their thoughts and prayers. We know it works...the tumor is shrinking and the double vision in her eye is disapating.

Although the last 6 weeks have been a blur, I feel that we collapsed into the canopy of love and generosity of friends and family. We are just now feeling like we are in a routine. “It sucks, but we gotta do it!!” is my new cheerleading mantra.

Thursday night we met up with other Eagle Rock families and teachers at the Everett Aquasox (Mariners farm team). The kids had earned the tickets for all the reading they had done this year. We had such a great time. Chris enjoyed being in the gang out in the field throwing his new football around. Sierra had fun rooting the team on in the stands. Neal’s parents came in from Idaho for 2 weeks, they also came to the game with us.

On Friday radiation again (this will be daily for the next 5 weeks). And then to U. Bookstore to order some books, then we met Neal at work for lunch (luckily he works within minutes of both hospitals), then over to Children’s Hospital for treatment. We had a long day in the clinic at CH. We saw the Social Worker and discussed finding supportive books for children (we’ve been all over looking). She gave me a new list of resources and she reached up to her shelf and loaded Sierra up with books to have and borrow, videos to borrow and a doll to keep. I will keep talking with them about how to get more books for the waiting room and for other families (through grants and fund raising). Next we met with the Play Therapist who played with and talked with Sierra about surgery to put in a port (take the external 2 line Hickman out and replace it with an under-the-skin internal port). Sierra has been worried because a port requires needles to access (Emla cream can numb the skin so the pokes aren’t felt). A port would also allow Sierra to swim this summer, and look like everyone else (except for the hair). We have had our troubles with the external line (daily flushing, bandages, rashes, etc.). Since Chris has been in swimming lessons daily for 2 weeks, she is more interested in getting a port so she can swim. The Play Therapist went and got Eddie, the puppet. Sierra was shown his port and she was interested in accessing his port. She talked with the therapist about he might feel. Then she put on a puppet show. After all of this playing, her doctor, “Dr. Tina” came and checked her out. She said she looked great, and that her counts were good. After ordering up the IV team to change the bandage and problem solve with us about the rash, she had her infusion. By this time it was 5 pm and time to go! She was so tired and burned out by the long day she was moody for the rest of the night. A real test on my nerves!

We plan a quiet weekend here at home, hopefully with Sierra feeling well. We thank all of you for your continued prayers. Our spirits connect each and every day with you in thinking about Sierra and other children who need our tender loving care.

Monday, June 16, 2003 6:12 PM CDT

Monday, June 16: Sierra had a hokey pokey tummy weekend. She got her weekend off to a good start with the Brooke Pennock concert Friday night-- she played her CD she gave her. Sierra stayed in most of the weekend resting. I am so proud of her, though because she did better this time around than our first week with Antinomysin D (icky). We bought her Seabands (accupressure wrist bands sold in the drug store)(as recommended by the Naturopath) and she only will use these, she does not want to take medicine for nausea (bec. it tastes gross she says). When her tummy is upset she checks the placement of the wrist bands and measures off the exact placement. I can tell she feels they work. Hats off to our 7 year old doctor!!! I remind her that SHE is the doctor and only she knows what works best for her!! We want to make a laminated name badge with her picture to attach to a necklace to wear at the clinic/hospital that says "Dr. Sierra Fuller". Today she goes back to the "biopsy" surgeon--he will be amazed at how well her eye looks. I will give him some tips he could give other parents before they go into a biopsy!!


Some days are diamonds, some days are stone....John Denver

This was definitely a diamond (week of June 7th). Sierra had another great week. Without the hats (and bald head underneath) you would not know she was undergoing chemotherapy. She has been to school every day this week!! She had one appointment on Monday and only missed the morning.

We have added some new pictures on the front page and in the photo album this week. Take a peek.

Last weekend was the most normal in a month. On Saturday, Chris shared his rollerblades and Sierra hopped on. She is a natural athlete, and having 5 years of skiing under her belt shows!! I could not keep up with her. I was petrified she would fall and cut herself (and not heal,etc., etc.). I put aside my motherly worries and let her experience life! She had the best time. After that Neal taught her the fine art of...Lawn Mowing. She had the biggest smile on her face while she got to help him. The kids have always helped in some way with this job. As babies he carted them around in a backpack as he mowed. Chris diligently swept the sidewalks and fed the grass to our garden. It was a great summer day!! Later that day Chris got lessons from Cyndi on embossing his birthday invitations, then Riley took him to the movies. Sierra had a “double parent!” We took her to Nordies to pick out another hat. With all the hats, she gravitates to the soft beanie/turban looking one with the drawstring (she now has a collection). We thought it would be a nice “date” with her. However, when we got there she melted down. We couldn’t understand her mood. She was happy in the car then when we got into the store to SHOP she melted down. After long discussions with her, and her throwing the pink hat on the floor...she said “This is the last hat we buy” I picked it up off the floor and took her to the check out. I realized that this was not a fun shopping trip for her...but a reminder that she had to buy a hat...a reminder of everything that has gone on in the past 4 weeks. Duh, it took awhile, but we finally GOT IT. She had also picked out a silk hat with girls on it that were doing different things “exercise girl” “yoga girl” biking girl” “ski girl” “wellness girl”, etc. she said she really needed it because it reminded her of the old her. We reassured her she was still the girl she always has been.

Sunday: We discovered a new pastime called Letterboxing. Our neighbor just started and told us about this. You can get on the internet and find out more info at Letterboxing.org. I tis a great way to turn hiking into a treasure hunt for kids. We took the kids to a local forestland park (the Redmond Watershed Preserve, for you locals). Before going, we printed out clues, packed up our rubber stamps (one per family member), a pocketsize notebook per family member and headed out to the woods. This “sport” is a combination of orienteering (on a trail) and stamping. The kids loved getting the clues and trying to find the box in the woods. It is like a treasure hunt. They ran and ran on the trail, we had to slow them down. Luckily, the clues had you sit and listen and observe before giving away the next clue. The kids loved finding the box and stamping their name stamp in the guest book. Sierra wanted to return the next day. This is what we will do this Fathers Day. I am glad we have found a local activity to do this summer, since realistically we can’t travel much farther than an hour radius from Children’s Hospital for the next year.

Sunday night I reheated a roasted chicken (remember, I don’t cook anymore since most of you out there are cooking for me–thanks!). Sierra loved the idea it was a whole bird...she dressed it up with apples, and other decorations, had dad hide his eyes and set the table (outside) and surprised him. She loved the presentation of a nicely browned bird. Is it the pilgrim in her?

Monday (June 9) Sierra had an appointment at Radiation (University of Washington). Her official daily radiation series of 6 weeks doesn’t start until next week (June 18). She obviously didn’t want to be there. She knew she would have to wear the mask she was fitted for the previously week. The was petrified of the hard mask. It is like tennis racket plastic with cut outs of eyes and mouth, the mask attaches to the table so her head is in perfect position for the radiation. Anyway, she was scared and being grumpy (esp. after being woken up at 6:30am). A beautifully dressed African American woman with a colorful scarf and wide rimmed sunhat came up to Sierra and said, “Does she want a Crispy?” I didn’t know what to make of it (I didn’t want to look like a fool for not knowing what a Crispy was...so I just had a dumb look on my face)...then she pulled out 2 one dollar bills from her wallet. Then it clicked what she was talking about. I said “Oh, we don’t need to bribe her?” She said “I love Crispies, and kids love Crispies, can she have these?” Then I realized it was O.K. When Sierra saw the money she beamed that beautiful smile of hers. I looked at the woman and thanked her so much. She said she loved giving out money to kids. Sierra jumped up and went to hug the woman. She reassured us that she was there all the time. Sierra got the news that her appointment was cancelled. So we were off to a great day. I told Sierra she had made a friend who committed a Random Act of Kindness and it was her job to take her turn now to brighten up someone else’s day. Later in the week when she was getting an ice cream cone right before her Friday treatment she insisted on taking her dollar into the shop...she then pulled it out with a big smile and said “I want to give this lady a BIG TIP!”–she then explained where she had gotten “so much money”. The ice cream lady was touched and she said she would in turn pass on the generosity. Over the counter we had a discussion about how generosity goes around in a big huge circle and make the whole world happy. I think that special ice cream cone helped her handle the treatment better :)

As we said before this week has been great. She has been to school, Girl Scouts and her last little league baseball game and party. She wasn’t able to play (risk of being hit in eye or chest), but the coach made her his special assistant coach. She did well staying in the out left field (no balls get past the base line usually). She was doing well as a coach–but we had to remind her not to tell people what to do, just be encouraging. One mom did tell me she appreciated Sierra showing her son how to hold his glove.

Friday, June 13: Sierra had her treatment of Actinomycin D (icky) and Vincristine. She also had doses of anti-nausea medicine. She handled it well. I took pictures of her at the visit. “A day the life of” kind of thing. She loves her doctors!! And you know what her doctors LOVE her!! She knows she is getting medicines so she tends to be absorbed in her books when they are in the room checking her out, but she is listening and she looks up with those beautiful eyes and cracks a joke, then goes back to reading. She was having a conversation with the doc. about Chris’s party the next day to the car races and she can’t wait to go. He jokes with her about what a huge social schedule she keeps. I can tell he has so much fun working with her because she is so fun. I know they really enjoy her spunk and personality. Her other doc (Dr. Tina) is a hip “girl doctor”- she comes up and tickles her from behind while Sierra is reading a Mariners poster. They have a conversation about the upcoming Harry Potter book. Dr. Tina loves HP and has read all the books 3 times.

After clinic we went home for a SPECIAL CONCERT!!! Yes, Brooke Pennock and her band came to OUR home to play to us!! She came in first (Sierra didn’t recognize her without her sunglasses. A family from school arranged the on site concert. A friend’s husband plays with Brooke and she clued him in on just how much we love her music and are big fans. We had such a great time with them singing to us. We sat on the couch with the kids and were able to snuggle, tear up, close our eyes and really listen, and just really be together with beautiful music. Talk about soulful healing!! At different times, I thought I must be dreaming, this can’t be. Incredible!! Since Sierra’s nausea comes and goes, it was hard to know how she would do. This was the best thing for her to take her mind off the tummy. When Brooke played her favorite song, Soda Cracker, Sierra sang along word for word and she began feeling a lot better and by the end of the concert was bouncing up on the couch throwing her stuffed animal in the air. Brooke and Sierra are on the cover of the website this week!

We are so blessed to have so many people thinking of Sierra and supporting our family. We have been incredibly amazed by all the caring and thoughtful ways that friends, family, and ‘strangers” are part of the community helping to heal our daughter.

Friday, June 6, 2003 9:53 AM CDT

Week of June 2: Sierra had a great week!!! She has had no jaw or throat pain !!! She is her old self! Neal did a great thing with Sierra the other day. He covered his head and had her look into his face. He covered his face and told her that his head looked like lots of other 40 year old guys--no big deal. People would not remember his hair from anyone else...but when he covered his head you could see his face, eyes, and smile and personality...that is what is different with or without the covering and THAT is what people want to see and remember.

Sierra had her third chemotherapy treatment (June 4) and kept us all in line. While Mom and Dad were talking to the doctors, she said, “I’m still here.” As usual, she read every book in the room she could find and by the time we left she had completed a clean sweep of the room. She talked with Trudy from ChildLife who is about to have a baby and asked when she was going to have the baby. Trudy said, “pretty soon.” Sierra, ever the comedian, said, “you mean in a few minutes?” “No,” said Trudy, “but in a few days”. Sierra then asked, “Can I talk to your baby?” and then proceeded to whisper into Trudy’s belly to her baby. Her blood counts were much lower than last week, but still in an acceptable range. It means she is a little more susceptible to catching colds or infections.

Neal went back to work. Then the girls went in search of hair and hats at Bellevue Square (forget school, we had more important things to do). On the way to the hair accessory store we stumbled on a photography studio called Photazz. They had time to take a few pictures. Boy, was she the drama/photo QUEEN!!!!(sssshhhh don't tell Neal--it is a Fathers Day present). The photographer woman could not believe how photogenic she is, and poised and POSED!!! Sierra first was a fairy in tulle and in fairy land, then she played "dress-up" with jewels and a feather boa and then she asked for the mink coat! At one point she was asked to lay on her tummy. She looked up and said very matter-of -factly all in one breath: "I have a central line, I have Rhabdo and that line is how I get my medicine. Did you know I am bald?, yeah, the medicine makes my hair fall out. Next picture" That is the first time I heard her explanation to a stranger. What a blast! I think she felt pretty darn special! After the photo shoot I took her to Claire's in the mall...we bought fake hair (pony tail to pin in her baseball hat) a satin 70's pink satin hat, a crocheted cap with blond kinky ponytails, and a normal white crocheted hat (I pointed out that the teenagers in the clinic seem to wear these). She had fun with the pony tail do (she even took her turban off in the store quickly to put on the pony tail hat). She got more looks walking through the mall with the kinky hair. Of coarse, people expect a 7yr. old girl to play dress-up!! Now if it were you or I we could not get away with buying cheap hair attachments! She is still interested in the long "internet hair" "I want 18 inch wavy brown hair, MOM" (www.hip-hats. com). We will wait a bit, she may want to get more for her hair dollar! She will play with the new hair and hats, but she always comes back to the pink (soft) turban that Neal bought her at Nordies on Monday on the way home from work. I have a feeling she will wear this or nothing at all...the internet hair may come in handy for the fall when she goes back to school. We will see. After the tragic Monday at school when her hair was literally falling out in clumps, I thought she would have a horrible time with this, BUT kids are amazing!! Sierra is becoming more comfortable with her new sassy buzz hairdo. "I'M BBBBAAAAALLLLDDDDD" she yells out the car window!! She is more comfortable experimenting with taking her hat off in public--I guess she likes the shock value!!! Yesterday we think the excitement of the new buzz was wearing off and the reality is sinking in that she will be bald for a while. We were both proud of her when she looked in the bathroom mirror last night and inspected her hair. I showed her where some of the hair is growing! (still she is 60ald with peach fuzz). The school has changed the "No hat rule" and they are encouraging kids to wear hats to school.. How cool is that? What an incredible supportive school community! We could not ask for better friends and neighbors. We are very blessed and count our blessings everyday!!

Sierra is the now the official "Coordinator of Family Hair Styles"...standby to find out what hairstyle she will be assigning YOU!! I lucked out, she wants me to grow my hair LONG this year. Poor Neal, stay tuned to see what she has in mind for him, at one point she mentioned the color Green ...

I took her to Bastyr Naturopathic Clinic to see what they recommended for nausea and nutrition. I got a lot of great ideas (anti nausea wrist bands,etc). We will keep you posted.

Tuesday, June 3, 2003 11:01 PM PDT

Yesterday (June 2nd) was a bad and good day. Sierra’s hair was going while at school and many tears were shed. Late in the day, after Mom was at school for awhile, Sierra made the brave decision to go to the haircutters. She got her haircut (very short buzz cut). Chris (9) also got his haircut in a very short buzz cut. Dad picked up a hot red hat and a scarf for Sierra on the way home (arranged for by Sierra’s teachers via phone to Nordstrom) After the trying day, we spent the rest of the beautiful summer day building sandcastles on the banks of the laconic Snoqualamie River and finished up with our favorite dishes at our special Mexican restaurant.

Today (June 3rd), “It was exciting and kind of a little scary, ” says Sierra. She said it was exciting to see her friends at school, but kind of scary because she was wearing a hat and didn’t have any hair. Earlier today Sierra went for her second radiology appointment. She got fitted for a mask (like a tennis racket mesh put over your face and molded to it). The mask is something she will wear every day while having radiation (it is clamped to the table to keep patients from moving during their 10 to 15 minute daily radiation). She tolerated it, but didn’t really like it, even though we tried to pretend she was Snow White, poisoned by the apple, waiting for her prince to come and kiss her awake. Of course she thinks kissing is “icky” so that may have not been the best motivation for a seven year old. She had to lay still today for 10 minutes while they did a CAT scan of her with the mask on, so they could develop their plan of attack with the radiation treatment. We go back next week for a test of their plan and then start treatment the next day.

Monday, June 1 2003

May 18th - We spend a quiet day at home. Sierra is in a lot of pain and we try to get her to eat. Lots of rest time. Neal and Chris go and buy a TV for the playroom, antiseptic soaps, buckets, rubbermaid containers, new towels, new thermometers, etc. We decide it may be time to get cable TV again. Chris and Neal have fun putting together the stand for the TV and setting up the bed in the play room as an extra bed for Sierra or a parent depending on the situation in the middle of the night. We prepare emergency kits and overnight bags for each of us, in the event of needing them.

May 19th - Sierra has her first chemotherapy treatment and has a great day. She is back to being her delightful, spirited, fun self. Later in the night, though, she is up many times with nausea and sickness. Evening meals come courtesy the wonderful Eagle Rock community. We are amazed and nourished in body and spirit at the generosity of our friends and town toward Sierra’s plight.

May 20th - Sierra says her stomach is “doing the hokey-pokey” and we know exactly what she means. Kids have a way of doing that...cutting through it all to tell it like it is. She has a hard time eating anything although manages some fluids.

May 21st - We talk with the children at Sierra’s school, explaining the situation and letting them ask questions. {Sierra attends a public school multi-age program which includes about 70 children in three classses, K-1 in one class, 2nd & 3rd in one class, and 4th and 5th in one class). They all play together and attend many schoolwide functions together so know every child very well. Sierra is in first grade and Chris is in 3rd grade}. The school nurse is there as well as counselors. The kids ask great questions and are very empathetic. They understand where the disease is, that its not contagious, and that it is treatable. We talk about side effects, and how Sierra’s eye and hair might look, and how she might feel sometime. Most kids are ok, very understanding and wanting to know how they can help. Several seem more scared and have been touched by cancer in their family. Sierra’s stomach feels better, but now her throat is very sore....we find out this is sever jaw pain that mimics a sore throat. We can treat with pain medicine but it makes it hard for Sierra to swallow anything, even medicine.

May 22nd - We go to the doctor because of Sierra’s pain, but the doctors clear us for our trip to Virginia and Sierra starts feeling better as soon as she gets enough pain medication and enough liquids.. She’s lost 4 pounds (not a big deal to you and me, but starting at 66 pounds it is a big percentage drop) and we are concerned.

May 23rd - The pain medicine does its job and the nausea is reduced. Sierra keeps down liquids and some foods and seems to be feeling better. Enough to go on the big trip.

May 24th - We fly to Virginia for Maria’s sister Cathie’s wedding. Sierra has a very important job...she is the flower girl, which we having been planning for a year. Chris has an equally important job, being the ringbearer.

May 25th - Sierra is almost as radiant at Cathie and Brian who tie the knot in front of a host of relatives. Sierra gets her hair done at a salon (first), has a great time with everyone. “I even got to have a real bridal bouquet and I got to wear the bridal veil and sit between Brian and Cathie,” Sierra said. And after the busy day, she sleeps soundly through the night pain-free for the first time since surgery.

May 26th - We visit Sierra’s great-grandparents, and we know Sierra has recovered as she eats two pieces of pizza for lunch and her entire special-order airline meal on the return flight to Seattle.

May 27th - Sierra has her second round of Chemotherapy and Mom dries her bridal bouquet. We have to take her temperature several times daily and in the afternoon it is higher than 99.5 which causes us to begin to recheck it every half hour. It slowly climbs and in the early evening goes above 101.0 which requires a call to the pediatric oncologist on call. We go to the emergency room, as is standard, and they draw blood to check her blood counts and to begin to grow multiple types of bacterial cultures to check for any signs of infection. After 3 or 4 hours we are released to go home. No signs of any bacterial issue, and he blood counts seem fine, and we wonder if she caught a slight flu virus on the trip to Virginia.

May 28th - Sierra continues to run a temperature although not over 101. Other than the fever she acts fine, and is her normal funny rambunctious self. In the early evening the temperature spikes again to 101.0, then 101.5 and we check again a few minutes later and it climbs to 101.8. Call the pediatric oncologist and standard protocol requires another trip to the emergency room. We go, and get blood tests again and her temperature drops back toward 101.0 and again we are released after several hours. This evening Sierra sleeps on the emergency room table, with a warm blanket and her Karen (doll) and Fluppy (stuffed dog) who have been through every treatment and test with her (they even went into surgery where her parents weren’t allowed). She sleeps on the way home, and she sleeps all through the night, with the fever having broken in the early morning. She is ok...it seems it was just a virus.

May 29th - Sierra continues to recover, although she stays at home, still not with enough energy to be at school. She has several visitors, including her baseball coach.

May 30th - Chris’s 9th birthday is a beautiful day. The School has field day and we volunteer to help out. Sierra feels well enough to come to school for field day and has a blast. I have a great time with the three-legged races, enjoying the sun and the carefree joy of the children.

May 31st - An incredibly wonderful entourage of friends appear at 10 a.m. and spend the entire day doing yardwork, planting new plants, trees, pulling up grass, all donated by local nurseries and friends. The area near our back deck is transformed into a soothing peaceful sanctuary. We work hard, we talk, and we connect even closer and our family is touched to our core.

June 1st - We relax and Sierra goes on a date with Mom and a classmate to see the new Finding Nemo Disney movie. Chris and Neal go to stores to spend some of his birthday money. Sierra has a great day.

May 31, 2003

Diagnosis:

Monday April 28 2003 Sierra complained to her teacher that she had a “headache “ in her eye. The school called and we took her to her pediatrician. Sierra’s eye was a little red, swollen and a little tissue inside the lower lid was swollen. Possibilities were pink eye, broken blood vessel, allergies, or an eye infection. The doctor said to take Tylenol and come back the next day if it didn’t go away. The next day it was more swollen so we went back to the doctor who sent us across the hall to an Optometrist. He prescribed eye drops. Just a day or so later her eye got redder. The white part of her outside eye looked like a big blood vessel had burst. He told us to come back 6 days later. The next day I called our local Optometrist who saw us that Friday. She looked at her eyes and immediately called a Pediatric Opthamalogist. He saw us that afternoon. The tissue was becoming redder by now . That afternoon he examined her and said “bad things don’t happen fast-so don’t worry-it probably is a broken blood vessel.” He prescribed stronger steroid eye drops. . He also took several digital pictures of her eye and emailed them to a orbital tumor specialist at the University.

Over the weekend the eye appeared to look better. By Wednesday (5 days after seeing him) her eye had returned to a very swollen state. I called him and he got her in that afternoon (Day 10). At that point he made a CAT scan appointment for the very next day and an appointment with the University doctor for that Friday. We thought perhaps a bone sliver might be the cause o the problems because Sierra she had fallen hard on this eye two years ago and has a slight scar in her eyebrow.

Day 11 (Thursday May 8th): The cat scan showed she had a mass behind her right eye, alongside or in the outside eye muscle that helps control eye movements. It was about 2 ½ cm long by 1 cm wide. We were scared and were scheduled to see a specialist the next day at 3. The Cat scan report talked of benign cysts, lymphangiomas, and hemangiomas, with no mention of the possibility of a tumor. Our Pediatric Opthamologist called in the afternoon with good news that he was 99% sure it was a benign tumor and he listed 4 names of benign masses. After hanging up with him we were relieved. But concerned that there was a 1% chance it could be worse.

Onto the internet that night to find all the different possibilities, including one very rare but scary one, called Rhabdomyosarcoma....(300 kids a year get it out of 80 million kids in the U.S.), but the average age of onset is 5-7 years old, and one of the prime locations is behind the eye in the orbit. We read the story of Joseph from Madison, Wisconsin on-line and looked at his picture and we saw our daughters’ swollen right eye right there in his picture. We called the opthamologist Friday and asked him as to what makes him so sure that it is benign --what if it is a “sarcoma”? He told us it was very unlikely and we would be seeing the orbital eye doctor later in the day. At three p.m. that day (Day 12) Friday May 9th, the specialist examined Sierra and looked closer at the CAT scan and ruled out the good kinds of masses one-by-one. We asked about Rhabdo and finally heard him say, “this is what it looks like at presentment,” but he said we really needed tissue to find out. It could be something else, he said, and he scheduled Sierra for a biopsy. He seemed so calm compared to what was going on in each of us as we had the discussion, but he also patted me on the back as we left. The time from when Sierra first had problems to being scheduled for a biopsy was two weeks, which we are very thankful for in hindsight.

It was a long Mother’s day weekend 2003. We worried, we panicked, we read, we talked, we paged Sierra’s doctors. That weekend was the worst–we were anxious to know something. We hung on to hope. We cried a lot. We let Sierra go on a sleep over and be “normal.” Why couldn’t the biopsy be done now? What if it was Rhabdomyosarcoma? What if it spread? By now her eyes were crossing and sticking!!! Finally the opthamologist called us back at 7 am on Mothers Day. We questioned, we queried, and pushed....An hour later we got a call from the hospital inviting us in the next for an appointment to see pediatric oncologists to help us understand why it would take until Wednesday for the biopsy. After our visit on Monday (Day 14), we learned more about how the surgery would be coordinated. We finally understood the intricate actions that might take place on Wednesday with multiple surgery teams and pathologists on hand to instantly flash freeze the tissue and give a diagnosis while Sierra was still under general anesthesia and if was cancer to do a biopsy of her lymph node (or remove) and bone marrow, as well as install a central line into her body for treatment. We were still terrified, but now we knew as much as the doctors in terms of what would happen. We also knew that the one surgery approach would minimize the risks of being under general anesthesia multiple times for multiple surgeries. Sierra also had a blood test on Monday which indicated markers for lymphoma were not present in her blood (another tumor which might look like this mass). This was good news.

The oncologists were gentle, available and shared the whole story. We figured if this is the path that we would have to take with a malignant diagnosis, then these people are professionals, they care, they are good people, and it would be ok. We were a little less scared. This gave us a chance to relax and enjoy Sierra and our family...we played badminton that Monday and Tuesday evening (or goodmitten as the kids like to call it), enjoyed the sunshine, had ice cream with grandma, took her down to our local beach , kicked off the shoes...sierra played in the sand and built sand castles. We could appreciate her spunkiness, her innocence, her joking, her genuine goofiness. For she had no idea what would hit her. We let the kids play hard, put on shows, we took family pictures and videos, ate a huge organic spaghetti meal prepared by dear friends the night before...there was lots of love being shared in those innocent days leading up to the biopsy. I just want to freeze those days—they are locked in my memory.

May 14th, Biopsy:

Sierra was very quiet the night before the surgery (biopsy) and the morning of. Her eye was hurting a lot, so we just kept reminding her that the doctors will figure out what we need to do to make in not hurt. And we will find out what medicine will work to make it better. She went into surgery happy. The anaesthesiologist was excellent (gave her a choice of flavors to pick of how the gas would smell...Sierra picked watermelon). We felt comfortable that she was in good hands. Many hours after the beginning of surgery after pacing and worrying, the surgeon joined us in the room. Our lives were crushed. The words still resonate in my mind...“It is Rhabdomyosarcoma.” We don’t want to do this. But we have to be strong for Sierra. We can’t lead on that we are scared. We take every minute at a time. She would have no idea what hit her when she wakes up. We did not want to scare her by telling her about the central line ahead of time. She went into surgery happy and innocent and has awoken now to a whole new world.

Surgery:

In surgery, after the biopsy was done by the orbital specialist, another surgical team removed the lymph node in her right neck. They also did a bone marrow aspiration with needles through the upper bottom into the thigh bones to check for spread of Rhabdomyosarcoma. Finally, they installed a Hickman line (a central line into her chest that goes up under the skin to a vein in her neck and down the vein into an area just above the right atrium of her heart). This line (named for the Seattle Pediatric Oncologist who invented it) allows easy administration of chemotherapy and blood draws without needles and shots. It requires a lot of maintenance work at home by mom and dad including daily shots in the line and sterilization, as well as bandage/covering changes.. The lymphecotmy made her neck very sore for a week and a half. Also her chest was sore where the line was for about a week. Sierra developed what she called her “special way” of sitting up, so that her neck wouldn’t hurt, rolling onto her side and gently raising herself up, proving her adaptability to the new situation.

In the hospital:

Sierra slept, complained of pain, and dad wheeled her IV into the bathroom several times during the night. Around 5:30 a.m., in the very quiet of the morning she awoke, very clear and we talked. I asked her if I could tell her what the doctors had found with her surgery and she said yes. I told her that her eye had a disease called Rhabdo and that was what had caused the bump in her eye, and that the doctors knew how to treat it but that it would take a lot of medicine and a long time to make the bump go away. I told her there would be a lot of tests today and that lots of doctors would see her but that Mommy or Daddy would be right with her all day and all night. She asked a few questions, and then went back to sleep. Later around 7 she discovered the TV and the Videos of Rugrats and Sponge-Bob and spent a fair amount of time distracted. The next day she discovered the hospital bed went up and down and that there were popsicles and ice cream (for sore throats from the surgical tube down her throat) and kind of decided the hospital was an ok place after-all. Being a generally healthy kid, it was her first time in a hospital since she was born on 3/21/96.

The tests (great news) (May 15th):

From an e-mail sent to friends, family and co-workers:

Sierra (age 7) went through a battery of tests today (there were 7 or more in all)...about 5 hours of laying still, going through giant machines that made noises in dark cold rooms, very scary....but she is a brave little trooper, and she smiled a lot when she got her very first wheelchair ride!

The good news we got just a few hours ago from the tests and biopsies is this: no signs of Rhabdomyosarcoma in her bones. No signs of Rhabdo in her lymph nodes. So the tumor is currently isolated to her eye which increases the prognosis immensely. From perhaps 25% five-year survival to above 85% (perhaps as high as 95%).

It was a very good birthday present for me and our family.

The treatment:

Sierra will undergo a year of weekly outpatient chemotherapy with two drugs: Vincristine and Actinomycin D. She will also undergo 5 weeks of radiation therapy from mid-June to late-July. Side effects are loss of hair, jaw pain, nausea, lethargy, increased sensitivity to sun, potential for catching illnesses much easier, and late effects (cataracts in right eye, higher risk for another cancer due to radiation).

After this year is up, she will be checked quarterly for 5 years with a cat scan and other tests to make sure the cancer doesn’t come back (recurrence). These will be stressful events for all of our family and friends.

May 17th....Going home (Mom gets a birthday present too):

When we were admitted the doctors told us we would be here a full week. After the tests showed no spread of the disease, we try to get back home into our own beds, thinking that will somehow get us back into our routines. We work hard to learn what we have to know to take care of her at home (Hickman line care, fever, how to reduce side effects, antiseptic and sterile environments, dealing with nausea, etc, etc.). We have to pass a test with the IV line team to make sure we can do it....our supplies are delivered by a gruff wherehouseman who drops them off in a large box to take home...it contains syringes, medicines, dressing changes, antiseptic wipes, etc. etc.). Sierra’s room is decorated by cards from each of her classmates, balloons (about 20 in all) from friends and co-workers. She has games, coloring books, books from the hospital, more Polly-Pockets than she can count, all signs of the loving concern and wonderful support our family has received from our friends, family, colleagues, and co-workers.

Maria gets a different kind of wonderful birthday present....Instead of the big party with friends we were planning at our house for her 40th at 6 p.m., we bring Sierra across the threshold of our home at 6 p.m. on Saturday. Still in a lot of pain, and in a whole new world, but home.

Also with instructions to come to the hospital on Monday for her first round of Chemotherapy.

Friday, May 16, 2003 1:47 AM CDT

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