Journal

Stella Journey: Now Cancer Free 2011: 2% chance to finding a donor match. We found our donor! He is a 27 year old man, who selflessly gave his marrow to Stella in July of 2010. We now have a face to the man who saved her life. Travis, Your a great human being. We ask if it was painful... He replyed he was a little loop from the drugs but no pain. Amazing. If you haven't signed up to give life do so now. It's easy, It's just a cheeck DNA swap of your mouth put on file. www.bethematch.org It feels great to be on the otherside.

In the land of Rockstar Stella… 4-4-10

We are back in the Doernbecher ‘Big House’ as of Friday April 2^nd. Stella had a small surgery on her first day; she is now receiving fluids and medicine through a “Hickmen line” port in her chest. We had been scheduled two weeks ago for this surgery, but her good cell counts were too low, so we all waited at home. This week her blood counts were still low, but the doctors decided that our best course is to go ahead with the second round of chemo. Stella did well with the surgery: within 3 hours she was out and about in the ward, visiting the art room and riding tricycles around the halls.

We brought back all the tubs of cards, pictures, and games that filled up Stella’s last room at the hospital. We have eliminated a bit of clutter and her room is looking beautiful. We are in room 7, near the last room and again close to the playroom and kitchen. This time we enjoy a nice view of the West Hills.

We are hoping to start a movie night tradition on Saturdays while we are at Doernbecher. Kid’s films will be played in the hospital playroom, which has a video screen and projector. We invite all Stella’s friends to come… (this will be a great opportunity for parents to steal a couple date hours while kids are here watching a film together). Check the website for weekly details.

Stella’s favorite part about her last stay was seeing all of you stop by to say hello — even those who had never met her. She felt so loved by everyone. Every time I would tell about a friend who thought about her, she would say “ wow, I am really loved.” As her mother I want to help her to continue feeling this way. I can’t imagine any sick child not feeling connected to a community. I believe this feeling she’s keeping will help her make it through her medical challenges.

I caught her a few times at home checking out her new almost bare head (I like to call it baby chicken fuzz). She would dress up and say, “I look good!” Again I am so thankful for everyone saying positive things like “ you look so beautiful without hair. I wish I could look that good without hair.” She does look pretty good. I think this next round of chemo will be the last of baby chicken fuzz. She’s got some pretty cool hats. Also we have received some great prayer blankets. My mother (Grandma Carol) has cousins in MN who recently made a beautiful blanket.

News:

RockStar Stella Cut-A-Thon raised over $17,000.00 for Stella’s medical expenses! Thanks to all the participating stylists and salons, a total of 61 stylists from Portland to Seattle. Thanks to my distributors Salon Services: Check out more in the following links:

Oregonian:

http://blog.oregonlive.com/themombeat/2010/03/young_leukemia_patient_stella.html

http://www.oregonlive.com/news/index.ssf/2010/03/with_every_snip_and_curl_portl.html

Katu:

http://www.katu.com/news/specialreports/88709592.html?tab=video

In medical news, we have one perfect Donor!!!!!!

This donor, who must remain anonymous for at least 1 year, matches perfectly with Stella on all 12 genetic markers. We hope that Stella will be ready for the Bone Marrow Transplant around late June.

Our small local efforts to spread the word about the need for more bone marrow donors with mixed and Latino heritage has brought in some national attention. The Marrow Transplant Headquarters asked our doctor if we would like to help with a national campaign for mixed heritage children. Of course I said yes to helping this cause! I would feel better if there were another two perfect donors behind this one, just in case we lose our perfect donor to an accident or some other mishap. So help me spread the word to anyone who is mixed heritage… they can receive a kit by mail, and it’s a simple cheek swab to get registered. You can pay or not pay, they will not refuse you. 

www.bethematch.org

Save the date: Saturday June 5^th RockStar Stella Benefit

We have created a fundraiser concert event for Stella’s medical fund. This event will be a two-part event. First, family entertainment and activities will run from 12 noon to 4 pm. Food and N/A beverages will be available. Then we will feature at least 5 great acts with alcohol service and food for adults, running from 6pm to 12 midnight. Both parts will feature a raffle/silent auction of great prizes!

The Rockstar Stella Benefit will be at the @Large Film Studio (“At Large”), located at 807 NE Couch St (1 block North of E Burnside). This amazing space has been graciously donated to us; it is ideal for a large concert event.

Keep your eyes on the Rockstar Stella website for more details, including band lineups and ticket prices. We hope to see you there! http://www.rockstarstella.com

Hello Everyone,

Update in the land of Rockstar Stella: We have been home resting and enjoying the normal days of home life. We thought we were to have a week at home, but we find that we are blessed with another week. Stella’s good white cell count was still too low to start her next course of chemo, so there’s no point to a hospital return at the moment. Since Stella’s first chemo treatment was so aggressive, the doctors warned us that her blood counts may take longer than normal to recover. Nothing to worry about, she is having a lot of fun with family and friends.

Our current plan is to return to the hospital on Tuesday March 23. At this time Stella will have surgery to move the PIC line in her arm to a “Hickman Line” in her chest. Her blood counts need to move high enough to be able to endure this surgery. Then after this day we will be in Doernbecher for 4 to 6 weeks for the second course of chemo. Peter has picked up more graphic design jobs and I have started to work Sundays and Mondays. If I can get help to have someone with Stella during the day I might even work a few hours during the week. 

During our time at home we were able to go to Alice in Wonderland twice, plus movie nights at home with sing-a-longs, “Mama Mia” and “The Sound of Music.” Stella has also had trips to OMSI (Local Science Museum) and the Zoo. Her requests to eat out were Esparza’s SE (a great place to play “I Spy”) and Lucca NE (a great place to eat pizza and ice cream). We have had several friends come over for dinner and a movie. We finally let Stella ride her bike. We were scared of her getting any scrapes… her body just can’t protect itself from infection. I was thinking about when I have seen children and adults wearing surgical masks… I thought they must have something contagious. But now with Stella I realize these people are protecting themselves from everyone else who might be carrying germs. This journey has opened my eyes to a whole new world.

A friend of Stella’s mom explained to her son before coming up to see Stella that there will be kids who are bald up there. They are bald because the medicine is working to help them get better. So after a few weeks of visiting Stella with a full head of hair, he was sad that the medicine wasn’t working. Now he’s happy to see her without hair. What a great way to look at this situation. Yeah for baldness, in the eyes of a child. Stella still is working with all of her cute hats. She talks a lot about wanting to be normal, but now she’s missing her nurses, the art teachers and all of her new friends at the hospital.

We did an interview with KATU channel 2 anchor Deb Knapp. What a wonderful caring person she is. I felt the need to help get the word out for bone marrow donors and the international donor registry. She even gave the Spanish news channel some of the story.

THIS Sunday March 21^st is our big Cut-A-Thon benefit event, with 26 salons and dozens of stylist participating all over Portland. This also happens to be the second wedding anniversary for Peter and I. We had our amazing friends donate a getaway night at a downtown hotel for the two of us.

Thanks to Grandma Pat for helping us balance our lives. I have been calling her Mary Poppins. “A spoon full of sugar make the medicine go down” xo to Pat

Thanks for all the planners on the dinners, lots of helping hands support, friends who have continued to help celebrate Stella in her home life and our amazing fundraiser team for our June 5^th event.

We are all getting ready for our next journey. Thanks for hanging in there with us. We know this is hard for all who love us. We love you and many hugs to back.

Dayna, Peter, Maya and Rockstar Stella

Rockstar Stella Update "Cancer Free as of September 2010!!!"

You made a difference in our lives... thank you for your support. It's been a long eight months for our family. We couldn't have made it this far without everyone's help. It took a village and we feel grateful for your support. We raised over $17,000.00 from the March Cut-a-Thon, then in June we raised over $14,000.00 from the Rockstar Stella Event. Thank you also to all who volunteered. Together we raised over $30,000.00 for Stella’s Medical Fund!

With all that financial support we have been able to pay our medical bills in full, plus we have been able to recruit a nutritionist and a naturopathic doctor to coordinate a dietary plan and supplements for Stella’s health and recovery. Check out rockstarstella.com for referral information for these diet gurus and other professionals who have helped our cause. We couldn't have done it without the dinners delivered to the hospital and to our home, the volunteers who spent time with Stella at the hospital, and (of course) all the toys and games that kept Stella’s spirits high. She feels great, her hair is growing back, and she can’t wait to get back to school after the holidays.

We now know what community means, and how much we can all do to support one another. Thank you for this gift. It can be hard to imagine what we can do as individuals, but when you add up the overall amount of continual support, we truly have the power to change lives.

Blessings to you from Rockstar Stella, Dayna, Peter, Maya and Fernando

Best Way to help us is:

Buy a ROCKSTAR STella T-SHIRT and Rock Star Stella Necklace at www.pdxboutique.com

$15 T-Shirt $20 Necklace

ROCK STAR STELLA MEDICAL BENFIT 

Thanks for the support:  June 5th ALL DAY Raised $15,000.00!!!!!

 Music , Auction and Entertainment: Click on "Benefit Concert" for more details.

Thanks to Brown Paper for being inexpensive and great to work with:  Brown Paper Tickets

RED CROSS BUS: Thanks to 35 donations that day. Help us continue to save lives! Donate often please. FACT: Portland only has a 2 days supply for the city. So we need to donate often to make sure we all have blood supply.

OUR SPONSORS: @Large Studio, KINK Radio, Widmer Brewer, CHAP Arts, and the RED CROSS 

Be Beautiful for Stella "Photo Shoot"! 

Pasha Productions: Created to help support Stella Food Education by donating her talent and time to do a series of Photo Shoots in Studio with for Only $100 ( normally $250 )

 All profits go to Stella Nutrition Funds: ReplenishPDX.com AndreaNakayama "Nutritional Counselor"

 Have beautiful photographs of your sassy self, your family, your pets, your products, with your friends, your band or . . . “ You got it, i’ll shoot it! ”

 Each shoot comes with:* A private online gallery * Your choice of one image “finished” ( as a digital negative for unlimited printing ) * A dvd with all of your images for view w/ option to order more images cheap

 Please help us give her back the support by getting your picture done with:

http://pashaproductions.com

pasha @ pashaproductions.com

503 -236 -5585

 Studio is located on 2nd & SE Main In Portland

Rock Star Stella Cut-A-Thon:

 Raised over $17,000.00 for Stella medical fund!!!! Thank you to Salon Services, Amanda & Trish from Arabella and all the salons! We are so grateful that Devon Hood with Mississippi PR contacted Laughing Planet on Mississippi and Por Que No?  to help donated food for the after event! Thank you Franz and Bryan. 

To see the news and the whole list of Salon and News: Salon Services Blog

Special thanks:  Sign up to be in the know with what's special in Portland.

The Oregonian: Writers: Amy Wang and Steve Beaven and Photographer: Motoya Nakamura

http://www.oregonlive.com/news/index.ssf/2010/03/with_every_snip_and_curl_portl.html

http://blog.oregonlive.com/themombeat/2010/03/young_leukemia_patient_stella.html

KOIN6:
http://www.koinlocal6.com/news/local/story/Daughter-of-local-salon-owner-fights-cancer/ba2DZqqphkCr2k7RgebWUg.cspx

KATU 2: Deb Knapp
http://www.katu.com/news/specialreports/88709592.html?tab=video

Portland Picks: Sign up to be in the know with what's special in Portland.
http://www.portlandpicks.com/ 

NW Stylist:
http://www.nwstylist.com/regional/2010/0310_regional/0310_rock_star_stella.html

Updates as of 2-25-10

This week Stella has felt great! She has regained a healthy appetite, and she has really enjoyed playing with all the kids who have come to see her. She is riding the hospital tricycle around the ward like a champ… we are so proud of her and her positive attitude! The doctors say that Stella is responding well to the chemotherapy… in terms of possible negative side effects, she rates a 9 out of 10 for good response.

Stella’s hair is getting very thin, and now it’s really setting in for all of us. She’s doing better then mama Dayna with her hair loss! A leukemia survivor from Stella’s school came to see her, and her hair was all grown back! It was so helpful to see another little girl a few years older who had recovered. It’s been very helpful to find others who have recovered. One thing we would still like to find is a child with full recovery from leukemia INCLUDING receiving a bone marrow transplant, and spending a great deal of time in the hospital. This would help us understand medical costs and also what helped their family during the illness.

Last week we all encouraged everyone who could to donate blood or/and to get on the bone marrow donor list for saving lives. Last week Maya, mama Dayna and papa Fernando were all tested to find a bone marrow match. We found out this Tuesday afternoon that Maya is not a match for Stella. Fortunately, the coordinator for the bone marrow program did find 4 possible matches for Stella in the international database. We are now crossing our fingers that our donors are reachable and are in good health. There is a shortage of individuals with Latino, African, Asian, and Native American heritage on the www.bethematch.org database… this is important for others who could be saved.

As one of the doctors said to me, we now wait for a long time until something changes. Stella’s white blood cells (both good and bad) have been wiped out by the first course of chemo, and we are looking for new white cells to populate her system. If her numbers bounce back far enough, she’ll be able to come home for a week. It’s going to feel like “Groundhog Day” with Bill Murray. I actually like that movie and it’s true. We can keep mixing up our daily routine, but we still have to be here until something changes.

On Mondays and Wednesdays Stella’s ward features musicians who come in and play music for each room. Monday is Heather, who comes to play the harp and has Stella join in. Wednesday is Dawn, who comes in with her guitar and brings lots of musical instruments for all of us to play. I have some good videos… keep checking our websites for new pics and videos. Everyday CHAP Arts program http://www.chap.name/ comes in to share art supplies and craft projects. Stella has already added her art to a T-shirt for a fundraising bike race, and also a flag that will be carried up Mt Everest.

Grandma Pat is leaving today… we can’t wait for her to come back in 2 and-a-half weeks! Her support for Stella, Maya and the rest of the family has been irreplaceable. Thanks also to all the great folks who have brought us dinners… we love you all!