Saturday, January 31, 2009


(post by Tammy)
The doctors were all on alert waiting to see if Natalie would hit a slump this week since she has been doing so good. They cautioned us and the nurses to keep a close eye on her. On Thursday, there was a huge gathering outside Natalie's door when I came back from heating up a cinnamon roll for Natalie's breakfast. When they saw me, they said, " We were all just talking about how amazing Natalie is doing. She looks great and hasn't had a fever." Although they usually do not discharge patients until their ANC hits 500, they feel Natalie is fine to go home if her ANC hits 200. She is at 180 today so we are really hoping and praying she can go home tomorrow. That would give us a week and a half at home before her third round of chemo starts.

So, how did we keep Natalie entertained this week during the wait? I did a lot of Mad Libs with her. She had finished the entire book that the PTA had given her the first day she got it so I ran to Borders and got her 4 more books. She loves it and laughs so hard at the silly stories we come up with. I actually do like Mad Libs because it's teaching her to know the difference between adjectives, verbs, adverbs, and nouns.

We also played Monopoly a lot. One of the volunteer teachers, Dinah, told me that she has never seen anybody play Monopoly the way Natalie and Grant plays it. They both strategize to win the game. I am starting to clue in to her game. Natalie saves her money the first couple of rounds until we are all nearly broke from buying properties. Then, she starts buying and offers to help us buy houses if we let her start buying houses on lots that she does not have a Monopoly on. We fall for it and she wins the game because we tend to land on her properties. She is a true business woman at heart.

At one point of the week when we got really bored, we googled some of Natalie's doctors. She has a lot of them because they all work as a team. It all started because we wanted to see if we could find what the "W" stood for in one of her doctor's middle name. What we discovered was that they all had a pretty impressive resume. Some have written books, won pretigious awards, and are leaders and pioneers in their fields. One is even a New York Times bestselling author, who is not only a writer when he is not on duty as an oncologist, but is also trying to obtain a degree in Divinity from Harvard. Wow, pretty determined people. Of course Natalie told them we googled them. They just laughed and asked what she found. They are trying to convince her to be a doctor or researcher someday herself. They keep telling her that if she ever needs letters of recommendations someday she's got it made.

Somtimes I wonder if Natalie got leukemia because she is going to help advance medicine one day. She actually is pretty tuned into her treatment and is already thinking of improvements that could be made. I think that's partly why the doctors adore her. She tells them what they should research and improve on. "You need to train the chemo to be smarter so it doesn't attack my good cells." " Why don't you invent a biopatch that lasts more than a week?"

Natalie has also made a mysterious new friend named Lara at the hospital. They both have never seen each other since they are both immunosuppressed, but the nurses and teachers keep telling them about each other. They think they will be great friends one day since they are both alike- fiesty girls who love art. What we know of Lara is that she is almost turning seven. She spends her day painting her own renditions of famous paintings that her mom has taped to her walls. She is also very smart. One day, Natalie's teacher came in with a message that Lara sends hellos to Natalie. I do think it would be great if they became good friends after their treatments so we're hoping they can meet each other when their counts are higher.

That's the update for now. We are extremely exhausted and looking forward to the long break from the hospital. Please pray Natalie hits 200 tomorrow!

Love, Tammy

Monday, January 26, 2009

Monday, January 26th

(post by Grant & Tammy)
Hi everyone,
Last week went pretty well for us despite Natalie's blood counts being extremely low. Today is day 10 of the recovery period after chemo. Natalie's ANC is at 70. To give you a reference point of how powerful chemo is, her ANC was at 1650 before second round of chemo. The good news is that chemo is working. The bad news is that Natalie is vulnerable to getting sick and infections until her counts recover. They said day 7-10 after chemo are the days where her counts will go the lowest before they go up again. She has been doing great so far-very energetic and happy. She is actually tiring Grant and I out.

As the doctors put it, while most kids do arts and crafts in their rooms, Natalie plans great projects for the day. They always love coming into her room to see what the project of the day is for Natalie. Last week she made clothespin dolls, clothes for her stuffed animals, colored crystals, her second movie (Baykids helped her with that), learned to knit, and attempted to build a big house out of popsicle sticks for her clothespin dolls. She probably would've finished building the house if not for the fact that she ran out of popsicle sticks. The staff here gave her sterile tongue depressors (expensive popsicle sticks) to help her out a little, but they were not enough to finish the project.

Sean came out to play Bingo on Thursday with Natalie for the first time last week. It was so sweet to see them laying next to each other in Natalie's bed giggling. He is so amazingly patient with her. At one point, Natalie wanted him to leave the room because he was too loud and he did it without complaining. Sean and I walked the halls and went to look at the fish tank in the lounge until Natalie was ready to have him back in her room. They played Bingo next to each other in Natalie's bed with Natalie looking over at Sean's Bingo card every second to make sure that he was playing correctly. Natalie won first and Sean won a minute after her. She picked out a book with a locket, and Sean picked out a robot puzzle. They had a pretty, young woman who was a childhood cancer survivor host Bingo. When Natalie saw her with the long, thick, curly blonde hair, I could see her eyes light up with hope.

We are hoping that her counts go up this week and no fevers and infections. If all goes well, we may have longer time at home as a family this round.

Also, thank you to the Gregory Gardens PTA for the gift package. Natalie played MadLibs for the first time and loved it. Thank you Mrs. Trette for the class picture and letters. That also put a big smile on Natalie' face. Lastly, thank you Maritza for the incredible art supplies and food. Natalie was craving a Costco hotdog and roasted seaweed the last couple of days so she is feasting on that for Chinese New Year today!

Sunday, January 18, 2009

January 18th, 2009

(post by Tammy)
Hi All,

As many of you have heard, Natalie started her second round of chemo on Jan. 8. It has been quite busy for us for some reason this second time around with Natalie. She has way more energy than the first round so we've been trying to keep her occupied with activities in the hospital schoolroom, walking around the hospital floor, and with visitors bringing craft activities for her to do. She talks non-stop all day and definitely keeps us and the hospital staff busy with her questions. The good thing is that the staff here all love Natalie. Some of the nurses tell me that they fight to sign up to be nurse. Sometimes they can't because somebody else has already signed up for Natalie for the day. We feel lucky to be at this world-class hospital.

She finished chemo this past Friday and is starting to get really tired because her counts are low. During chemo, she always is full of energy. It's the two or three weeks after the chemo that she gets the fevers and her risk for infection is high. Those are the weeks we really need extra prayers for her to not have any complications! We've been asking everybody to pray that the rest of her chemo treatment goes as well as the first round or better. She did so incredibly well the first round and we truly believe it is because so many people prayed for her.

Grant and I met with her main treating doctor yesterday and she said that they are sticking with chemo for Natalie since it is effective. No bone marrow transplant because Sean is not a match for her and the risk of complications from a non-related donor is not worth trying in her situation since chemo is working. She said that after this second round, Natalie has 3 more rounds of chemo. They are all a month long. They explained that the goal of the first round was to get her to remission, which was accomplished. The goal of the second-fifth rounds is to kill any other cancer cells that could possibly be there. They said that studies has shown that those who only do two rounds of chemo have a higher chance of a relapse, which they are trying to avoid.

If all goes well with no complications, which we are praying for, Natalie should be able to resume her normal life activities in May. The thought made Grant and I tear up a little because our life is everything but normal these days. They will remove her broviac in June. It is possible that she could make her big wish this year and go to Disneyworld.

This is what we are asking people to pray for:
1. Natalie is cured this year. No relapse ever and no bad side effects from the treatment that she is gettting now. I know that the doctors can't label her "cured" until five years, but there is no reason why she can't be cured this year.
2. No complications at all with her entire chemo treatment. That the rest of the rounds go as well or better than the first round.
3. Natalie will never need a bone marrow transplant. Her bone marrow will make the good blood in abundance on its own.
4. Her body recovers quickly from each chemo treatment so we can have longer time at home as a family. It was so wonderful to be home as a family even if it was only 4 days the last round.
5. Lastly, none of us get sick!

We are pretty exhausted. Actually, beyond exhausted these days. My sister Tracy is helping out this month and my mom is helping out with Sean until March. Grant's parents and my sister Dinh will come back in March to help out as well. We are trying to figure out support after that but that takes energy that we don't seem to have these days. This is where we need help from our friends to figure out. If all goes as planned, then April will probably be the only month we need extra help with.

Thank you as always for all your prayers and support for our family. Although this has been so hard for us, we do feel fortunate to have the friends and family we have.