Tuesday, February 23, 2010

Match Found!

We have great news that a match has been found for Natalie's transplant! Thank you so much to all of you who have worked so hard for her drives, prayed for us, spent your free time emailing your network of friends to come to the drives, ordered kits to swab your friends, sent in kits, tested, and supported us through the search.

We heard that Natalie's hometown drive at Gregory Gardens was wonderful and 700 people came from all over the bay area (some from Sacramento)to get tested and registered. Gregory Gardens families and staff, you are all truly amazing people. Thank you so much for pulling the community together and putting so much heart into helping us and so many people in our situation. We know some of you got there at 7am and didn't leave until 6:00 pm that day.

The Cal drive also went well too. Our friends and volunteers got 200 people tested and registered. We heard that some people actually thought they were donating their marrow that same day and were ready to do that. Wow.

Thank you to everyone who organized and helped with all the other drives as well. If we haven't mentioned specific information from those drives, it's just because we haven't heard the stories yet from those drives. We are sure there are special stories there too. We feel so lucky to have so many people support and carry us through this hard time. We honestly would not be able to do any of this without you all.

We are so happy a match has been found. Yes, the donor is asian. What a special and wonderful gift this person has given our family. It's one less thing to worry about as we gear up for the transplant, which is now targeted for early April. We need all your prayers that it goes really well without any complications.

For those of you who are still doing drives and getting people registered, please don't stop. We encourage people to keep getting tested and registered. We really want the registry to grow with more minorities getting tested as we have learned that there is truly a need out there for minorities to get registered.

The immediate need we have now is for prayers that Natalie's counts go up so she can go home for a couple of days. We were hoping this weekend, but it's taking longer than we expected. We really want Sean and Natalie to get some time together. As you may know, all hospitals are not allowing children under 16 to come visit due to H1N1(swine flu). They won't even allow siblings to visit. Sean and Natalie have not seen each other in person for a month.

Tuesday, February 16, 2010

Counts Slowly Going Up

Natalie's counts are slowly going up so we are hoping that she can see her brother this weekend. She misses him so much and he misses her.

She's been in a happy mood yesterday and today. She's also been busy painting every day with the supplies from the lovely gift basket that her school gave her. Thank you Gregory Gardens for the basket.

Natalie recently learned how to knit from her auntie, so her time is now occupied with that too. On top of that, she is working on a couple of props for a new movie she wants to make this Friday with Sadie from BayKids. The first movie she made in Fall 2008 was a hit, so now Natalie wants to make a sequel to that movie. She won't let us share what the movie is about though. Only a few family members have been allowed by Natalie to view her movie, and that's only because they were present when she filmed it. She needs to crank at producing a script for the sequel though. So far, the script is all secretly kept in that little head of hers.

With all the projects she has going on, Natalie's bracelet business has taken a hit. She has orders from customers waiting, but Natalie is no rush to fulfill those orders. She will only work on them when she is inspired to. Part of it is because she's made enough money for her Tiffany elephant. A huge part of it though is because she is an 8 year old who doesn't want to spend all her waking hours making bracelets. She has too many interesting books to read, too many other things to do, and too many questions to bug her nurses with. I am afraid to report to her faithful bracelet customers that Natalie's bracelet business is slowing to a halt.

Do you know who inspired Natalie to make button bracelets? It was Lisa Gruen who made Natalie her first button bracelet and showed Natalie all her beautiful button bracelets one day at her house. Lisa is a mom at Gregory Gardens and she makes the most amazing bracelets out of beautiful buttons. So for all of you who love Natalie's bracelets, you can still order bracelets similar to the ones Natalie made. Just order them through Lisa, who is really devoted to her bracelet business.

We need all your prayers to find a bone marrow match for Natalie! Natalie wants people to pray for two things for her : (1) to find a bone marrow match, and (2)for her counts to go up. She has two big drives coming up this Saturday at Gregory Gardens and the following Monday at Cal.

Monday, February 15, 2010

Valentines Day

Yesterday was Chinese New Year and Valentines Day. It was a little sad to be stuck in the hospital again two years in a row during those holidays.

We had Sean surprise Natalie outside her room window with some Valentine balloons and his happy smile since he is not allowed in the hospital. She was so happy and giggling when she looked down and saw his big smile. He was sad to not be able to visit her. He said Skype is not the same as seeing Natalie in person. Please keep praying her counts go up and she can at least go home to see her little brother before the next round of chemo. The magic number is 500. She is at 70. She really misses Sean too.

Thank you to the families at Sequoia Elementary who sent Natalie the beautiful flowers yesterday. Also, thank you Mrs. Trette for the yummy cookie bouquet.

Butterflies In Natalie's Room

Thursday, February 11, 2010

A good night, sneak peek, and food. 02.11.10

Grant: I'm in a good mood tonight. Natalie is reading a 2nd book and she has already finished one. (I'd tell you which one, but she might get mad at me. Natalie likes her secrets.)

A few days ago, Borders donated a bunch of books. I picked up Newbery award winning book, the Mixed Up Files of Mrs. Basil E. Frankweiler. I started it when I got it and finished it tonight. A great read and I am happy to have been able to finish it. I saw a movie adaptation of the book when I was a kid, but I didn't realize it until I was halfway through it. It was a good flick.

I've been thinking about the blog for a while, but things have been pretty crazy.

Sneak peek:
Jackie Chan An appeal from Jackie: "I recently found out about an 8 year-old girl who has leukemia and needs a bone marrow translplant. I recorded a public service announcement to appeal for your help and now I am asking all my Facebook fans to do what they can. Please help!" Click here for information: http://www.dkmsamericas.org/drives/help-save-natalie-and-others

Yes, that Jackie Chan. A friend of ours got him to record a short video. They're editting the video now and it will be coming soon to a website near you! We're touched that he is helping Natalie.

A number of people brought us food and we enjoyed it all. Special thanks to Mrs. Lutz for her homemade mac and cheese and divine chocolate chip cookies! Natalie is not a chocolate chip fan, but she ate at least 2 servings of the mac and cheese. My parents and I love Mary's chicken soup. Susie's roasted chicken, carrots, garlic, onion, and potatoes was another favorite. I could go on, but I just wanted to let you know that the Nakatanis are eating well.

Natalie's fierce appetite at the hospital is surprising all of us. We're really glad she is eating. We eat the hospital food and she orders different dishes from home or takeout. I feel like there is always plenty of food around, especially now that Tammy's mom is back.

(Natalie just finished the 2nd book.) Natalie also just sold 2 bracelets.

Still Waiting

We are still waiting for Natalie's counts to go up and trying to make the most of the time here while we are waiting.

Natalie has been pretty happy, energetic and eating well the past week. Her weight has been stable too so that is good news.

I took some pictures of the beautiful rainbow and butterfly decorations in her room with my blackberry. It looks like a butterfly garden in here thanks to her gramps. He is amazing with scissors. Natalie tells everybody that he doesn't even have to draw out the butterfiles before he cuts them. I will try to post them up for you all to look at tonight.

One of the doctors gave Natalie the idea of making bracelets to sell to the staff here. She has a bunch of beautiful beads that were given to her by my work to keep her busy. Natalie wasted no time in making and posting a sign on her door to sell her bracelets for $10. So far, she has sold 11 of them so business is doing well. We even got an order to make a poodle collar so her business is expanding beyond just bracelets. Natalie is saving the money for her Tiffany fund. Yes, one of the nurses told Natalie about Tiffanys and now Natalie wants to buy something special from there. In fact, she has been on their website a few times looking through the inventory in the $150 or less section on their website. So far, the decision is between an elephant bank or a silver butterfly necklace. At least, the business is keeping her happy and busy.

Natalie has also been busy with visitors. Christine came on Sunday. Ms. Danna came to visit her on Tuesday with cupcakes to decorate for the nurses. Natalie had so much fun and she even got Ms. Danna to play WhooNu with her. She also has her regular visitors that work here who keep her entertained.

We have a full day today too. Her hospital teacher is here spending time with her now, Bingo is at 2:30, and then we are in the playroom for a big chunk of time after that.

Please keep praying for her counts to go up soon. Sean misses her so much and said the other day that what he really really wants is for Natalie to come home.

Friday, February 5, 2010

Our Friday

Natalie's biopsy procedure went well. We are still waiting for the results, which may not come until Monday. Our poor little girl woke up hungry and we had to hide all the food in the room so she was not too sad to see them. Good thing her procedure was scheduled early so she only had to fast from 10 pm until 11 am. The moment she was back in her room, she asked for food. I had to walk to a dim sum bakery that was 15 minutes away from the hospital to get her the sticky chicken rice she loves so much. It was worth the walk back up the hill since she devoured almost all of it.

She was a little sore from the biopsy draw. It made me think that this is what her bone marrow donor will feel when we find that special donor for her. The only difference is that her donor will only have to feel the soreness once and be done with it all. Natalie has had to do this procedure and deal with the soreness so many times.

After sitting on an ice pack for an hour, she was up and ready to play WhooNu with Grant and I. We've been playing this game with her ever since she found it in the playroom on Wednesday. It's a game she played with her class at school. It's pretty fun, especially seeing how happy Natalie is while she is playing the game. We all realize we know each other too well to stump each other though.

Natalie did not have a fever the whole time we were with her today. We are hoping it's gone for good.

On our way home from the hospital, we were hurting. It's really hard to be away from Natalie. We know she has fun with her gran and gramps, but we really miss her spunk at home. The house is so quiet without her around and it doesn't feel the same. We all want her home and healthy again.

Thursday, February 4, 2010

Fever and Biopsy

Natalie had a rough night last night. She spiked a fever and they had to draw blood from her broviac and poke her arm for blood at midnight to make sure that she did not have a broviac line infection.

They started her on some strong antibiotics last night. Her fever subsided this afternoon, but looks like it's creeping up a little again.

Today is Bingo Thursday, Natalie's favorite day all week at the hospital. She is in good spirits, although a little tired. They want to do a follow up biopsy tomorrow at 10 am to check her bone marrow. We need prayers that the biopsy results are good, biopsy goes well, and Natalie's fever stays away.

Thank you to all who are praying for us, working so hard organizing the bone marrow drives, getting tested, wanting to get tested, and getting the word out to people about the drives. It really means so much to us that you are doing everything in your power to help Natalie. We are blown away by people who don't even know us at all, but are working hard to help Natalie. You are all incredible people. Your efforts free us up to focus on taking care of Natalie's daily needs (emotional and physical).

Natalie's website, www.hopefornatalie.com is up and running. Thank you so much to Patrick for filming and working his magic to create such a beautiful video for us. Please visit the website for information on all the various marrow drives that are taking place in Northern CA and Southern CA in the next few weeks. We really need to get the word out to all people of asian descent to please test to see if they are a match. Please pass the word out to all your asian friends. I know this is asking people to step out of their comfort zone, but we really want people to not be afraid of the testing or the word, "transplant". The test is just a cheek swab with a cotton swab. If they are a match, they will be asked to be a donor for Natalie's bone marrow transplant. I think a lot of people hear the word "transplant" and they think they have to give up something that they can't get back again, like an organ. It's not true. They are basically being asked to donate some blood or marrow that will be transfused into Natalie if they are a match. Some people resume normal activities the very next day and their marrow is replenished by their own body in a few weeks. Their act of kindness makes a huge difference for Natalie. There is more information on Natalie's website. We just wanted to post something here to help people not be afraid of the process or help their friends to not be afraid of the process. I really don't think a lot of people are educated about the whole bone marrow transplant process. Honestly, we were not educated about this until now. After being in the midst of this with our little girl, we would totally not even think twice about being a donor if we were a match for somebody out there.