Friday, February 27, 2009

Home Sweet Home

Natalie wanted to go home so bad yesterday that she skipped Bingo. That says a lot for someone who has a passion for Thursday Bingo at the hospital!

We are happy to be home. Natalie's appetite is insatiable when she is at home. She eats non-stop. She is taking a break from arts and crafts to do something she can't do at the hospital- cook! She made herself a ham and cheese omelette this morning (with supervision of course). This afternoon, she made a pineapple upside down cake almost all by herself. The kitchen was a little disaster when she was done though. I helped out only with the parts where she had to go near the hot oven. She wanted to make homemade ravioli tonight, but eat hotdogs for dinner. I told her that we'll save the ravioli for tomorrow night then because it's a little ambitious. I've never made it before so we'll see...

Sean and Natalie are having a blast playing together. Sean is so excited that he's bouncing off the walls literally. He bounced off the couch and hit is head on the floor today. He's okay but I feel like he needs to wear a helmet with all the mischief he gets into. He knows to be careful with his sister though. He tells me, "I have to be careful with Natawee's broviac?"

While Natalie and I were baking, I asked her if she really was serious about the 500 elephants. She said, "Of course not. I just want to see if people are really reading my blog!" So for those of you who are thinking of getting her the elephants, please don't! She does love elephants though and happy to collect whatever she can collect.

I told Natalie that Maritza and Jennifer had arranged something really special for her when she is done with her treatments. The Oakland Zoo will let her come real close to the elephants and watch them feed them early in the morning before the zoo opens. She can also watch them get their pedicures. She's so excited about that!

We are doing well. Just enjoying some peace and quiet together before we start the next round of chemo next week.

Thursday, February 26, 2009

We're home!

Natalie's counts hit 390, so we got to go home! Busy day today, will give an update later. We expect to be home for the weekend and go back to the hospital Tuesday.

Wednesday, February 25, 2009


(posted by Natalie) I want 500 gray elephants that are any size

a little bit of waiting...

(post by Tammy)

Natalie's counts jumped up to 290 but we can't go home until they stay above 200 for two days in a row. Maybe tomorrow. We are a little sad.

Tuesday, February 24, 2009


(by Tammy)

So far Natalie has not had a fever and her counts are going up. She's at 180 ANC today so if she does well and her counts go up tomorrow past 200, we may possibly get to go home for a bit again. Please say a special prayer for us that Natalie's counts will go way up tomorrow and she does not have a fever at all this entire round.

Natalie is getting bored. The nurses had compassion on her and decided to disconnect her from the IV pole last Thursday so that she can have some freedom. She loves going to the playroom without dragging that heavy thing with her.

Last Friday Lara turned 7. Remember Lara from my previous blog? Natalie gave her 7 handmade paper flowers and a note. Well, she couldn't hand them directly to her since both of their counts are low so she had Christina, the nutritionist, deliver them to Lara for her. Lara gave Natalie and Sean some party favors. It makes me happy to see a celebration on 7 Long. Even the little celebrations they have when one of the kids get to go home. There are just so many challenges at the hospital that victories are so sweet.

Monday, February 23, 2009

Natalie wants a elephant

(posted by Natalie)                          

can anyone get me an elephant?

We're a special family!

(Posted by Grant.)

It has been a tough time and a dark time. I've had trouble staying positive. I got some encouraging news tonight and I'd like to share it.

Our nurse tonight is Lisa. She's worked here over 25 years and her daughter also works here. We've had her daughter before, but this is the first time we've met Lisa. When Lisa came in, she introduced herself and said she had heard good things about us. During one of our previous stays, when one of our other nurses was leaving the floor, she said that we were a special family. I wanted to ask her what she meant by special, but, of course, she left. For the most part, we don't feel very special. We frequently feel very sad and very lost. Don't get me wrong, we know that we have great friends and a great family and that we've gotten great support from both, so we feel like we _have_ a special family, but we don't feel like we _are_ a special family.

Hopefully, this explains why I was so anxious to hear what Lisa had heard about us. She told us that she never got us before because there is usually a line of nurses that sign up for Natalie. (We knew that. A handful of nurses fight to get abused by Natalie, to trade banter with her and to answer her endless questions. Natalie's regulars weren't here tonight, so Lisa finally got to meet us.) Lisa said that everybody loves Natalie, that she is a joy to be around, and that she has a nice family. Tell me about the family part! We've heard the stuff about Natalie and we get it. She is spunky and fun, so we know why they like her. Enough about her, what about us? Ok, what about me?

Lisa said something about nice parents and good parenting. I told her that helped, because we don't really know what everyone else does, we only know what we do, the mistakes we make, and how we feel. An unbiased outside perspective is invaluable. We never know if our friends are just trying to lift our spirits. Well, Natalie says she wants me to stop writing on the blog, so I guess it is time to turn in. To all a good night!

Just read this to Natalie.

Thursday, February 19, 2009

"Whew, that was close!"

(post by Tammy)

Yesterday was a pretty rough day for Natalie. Her counts are really low so they had to give her a blood transfusion and platelets transfusion. It still surprises me how strong chemo is. Eventhough Natalie started this round with more platelets than the other two rounds ( she had over 1 million), the chemo knocked them all down to only 10,000 .She pretty much napped most of the day. By evening, the transfusion kicked in and she had a ravenous appetite and energy. She devoured allmost a whole banana nut muffin, some cheetos, some roasted seaweed, some rice crackers, and some madeline cookies.

Around 10 pm, her nurse noticed that Natalie needed a dressing change for the dressing around her broviac site. As they were changing it, they noticed that Natalie's sutres around the opening of the site had slid way down her line. They were worried about her broviac line being shifted from the central location and had imaging come up to take a chest xray at 11pm. Natalie and I were both scared. After we prayed together, she fell asleep. I was too racked up with worry to sleep at all so it was a bad night for me. I wanted to call Grant, but it was past midnight. I ended up emailing some friends to please pray for Natalie.

Thanks to some special prayers, today was a much better day! Natalie woke up happy that it was Thursday Bingo. She loves Thursday Bingo day. Although we were both still worried about the outcome of her xray, it couldn't take away her excitement about Bingo. To make things better, she got one of her favorite nurses today. It was a pleasant surprise because Robin does not normally work on Thursdays.

The doctors finally made their rounds at 10:30 am, and delivered good news as well. Since Natalie's line is still in the central area, the line is still good. No need for another surgical procedure to fix it! We were happy. Natalie was relieved. In her own words, "Whew, that was close." They sent a surgeon up around 3:30 pm to confirm it was okay. No more wrestling with Sean for Natalie though. We do have to be more careful with the line until her treatment is completely over and pray it doesn't move any further away from the central area where it was placed.

Natalie also got another special surprise today. Robin surprised Natalie by making a special visit to Bingo while it was being aired live. Natalie was focusing really hard playing Bingo from the tv in her room when Robin popped up on tv and called out, "N is for nurse and for Natalie". That put a really big smile on Natalie's face.

Natalie's Bingo prize? Another stuffed elephant. And it sings, flaps its ear, and moves its mouth. She named it Elloso. So, she now has twelve elephants: Elley, Ello, Eleanor, Elleyina, Ellojo, Ellloro, Ellatina, Ellafuss, Ellaney, Eloise, and I can't rember the last one. She loves elephants. Who wouldn't? They are so wise, brave, and hardworkers. There is a story behind how she got each one, but I'll save it for another day.

Monday, February 16, 2009


(post by Tammy)

Natalie's counts are hitting low again. She was at 190 ANC yesterday so hopefully they will dip just a little more and start climbing up again. It is possible, if she does not have a fever, for her to go home soon like last time.

We've had quite an exciting weekend filled with visitors. Grant's parents are here to help out for two weeks and they gave Natalie a gift from a friend that Natalie's gramps has known for 40 years. Natalie loves her new gift and has been using it whenever she can- a pink Sony digital camera. It's better than our digital camera. We'll try to post the pictures on the blog when Natalie is ready to part with her camera for a bit. We think it's pretty cool that Natalie can now capture pictures from her view of her journey here at the hospital. Natalie has even taken pictures of herself, which is a big change from not allowing us to take any pictures of her.

Jenny, one of the nurses, also gave Natalie some pretty origami paper and taught her how to make a crane. Christina stopped by as well and made more picture frames with Natalie.

Natalie is still as energetic as always. She has been doing good so far with this round.

Thursday, February 12, 2009

The View from Here

(post by Tammy)
We are finally getting back into the swing of living at the hospital. Here are some views from our room. We can see the water from the bay and the big ships sailing by. We can also see the bright lights from the city at night.

Sometimes I can't believe that we are actually living in the city. We've tried the chicken that everyone raves about at San Tung Restaurant on 9th and Irving. We've gotten cheese bread and cookies from Arizmendi, tried the yummy mango sticky rice from Marni Thai, tried the flaming hot curry from Naan and Curry, and also have visited Peasant Pies many times. Yes, our family loves food. Natalie loves the udon at You See Sushi. When we were at home, she asked if we could drive all the way to the city to get udon there. We tried getting her udon from other Japanese restaurants, but they are no match for the udon at You See Sushi. Since it's just 2 blocks away from the hospital, the owners know my voice now when I call in for take out. They ask me how Natalie is doing and give me their wishes for her to get better. If it wasn't for Natalie's situation, I actually would enjoy the adventure of being here.There's so much good food to eat and so many things to do.

Natalie is doing good. I have to admit that she impressed me so much with how well she took the eye drops. Even at 4 am, she would get up and cooperate without a fuss. I almost got her another elephant as a reward for doing so well, but I don't think there is any room on her bed for another one. We're definitely all glad that whole ordeal is over for this round though! We can actually sleep.

Natalie finished her chemo treatment on Tuesday morning so now we are waiting again. Waiting for her counts to go down and then recover. Her ANC is at 1200 today so we have a long way to go since it has to drop really low, and then go up again.

Christina, one of the nutritionists, stops by almost every day to do some kind of craft activity with Natalie. She has become part of our family and we are so grateful that she loves Natalie. She also watches Sean too. This past Saturday, both Christina and Yolanda stopped by at the same time and watched both Natalie and Sean while Grant and I walked around the area. Christina went to Cal too. She is so creative. We think she should be a child life specialist instead of a nutritionist because she is so good with children.

Natalie also met Becky this week. Becky is a young woman from our church who is a childhood cancer survivor. She came to visit with her husband Zach. Natalie wouldn't let Zach in the room at first. After talking to Becky and seeing some pictures of Becky's journey with cancer, she eventually let Zach in to the room. I guess she figured it was okay since he was by Becky's side in most of the pictures (as her boyfriend) when Becky was going through cancer treatments. Becky is going to be Natalie's email buddy as she goes through this, and also will visit whenever Natalie is up for it. We are happy for that.

We are busy with arts and crafts as usual here. Natalie is enjoying her time with the nurses. She is also learning a big lesson in life that there is a downside of being popular, which is that she can't spend time with her favorite nurses all the time if everyone wants a piece of her time. The nurses with seniority have no problem being her nurse, but the new nurses have to fight more. The nurses tell her that there is a long wait list to be Natalie's nurse and it's almost a miracle if they end up getting assigned to her.

Today is Thursday Bingo here at the hospital. It's one of the days Natalie really looks forward to when she gets up!

Wednesday, February 11, 2009

Just got off the phone with the girls

(post by Grant)
The boys are at home and the girls are at the hospital. I'm a little sad; I miss my girls! Absence does make the heart grow fonder. Sean got some new Pokemon cards, so he's pretty happy. Actually, he's pretty happy pretty much all the time. He's very confident, but at the same time he can be sensitive, too. He really misses his sister and prays that "she can come home for 10 weeks!" He says that's a long time.

My parents are coming in tomorrow, then I'll spend the night at the hospital Friday, and hopefully gran and gramps can stay with Natalie Saturday. That leaves Sean with us for Valentine's night. Who stays Sunday? Hmm, I have an appointment in Burlingame on Monday, so I can't do it. Or maybe I could, as long as my replacement gets in by about 10:30am. We deal with this kind of logistical stuff all the time. Who's with Natalie? Sean?

Well, I'm going to brush Sean's teeth now.

Right before I signed off, I saw that there were actually comments. I didn't notice them before. Thanks for thinking of us, friends and family!

Tuesday, February 10, 2009

Goals and motivators

(post by Grant)
I read this passage in Job this morning, "But I do not have the strength to endure. I do not have a goal that encourages me to carry on."

It is not a positive passage, but it emphatically does not describe how I feel this morning. We do have goals, many, many, many goals! Here are a list of our goals, some of the ones that encourage me to carry on:

-Natalie just said, "Tomorrow at 10am is my last eyedrops." This round of chemo, we've had to put eye drops in her eyes every 6 hours (4pm, 10pm, 4am, 10am). We're looking forward to the end of that.

-My parents are coming soon to help out.

-Going home after this round of chemo, hopefully at the end of February. It will be nice to have everyone home together again, to sleep in our own beds.

-2 more rounds of chemo. If they last a month each, we could possibly be done with round 4 of chemo in March and round 5 of chemo in April. Home in May!?!

-Having her broviac removed in June.

-Natalie qualifies for Make A Wish. Currently, her big wish is for all of us to go to Disney World Florida! If all goes well, we could even go there this summer. Natalie and I might go bass fishing there (with a guide and a boat).

-10:35am Outside, there was a round of applause and cheers. People are laughing because Yousef is going home. The stayff says he's been here a year. We want to go home, too. I hope people miss us and are both happy and sad to see us go.


Saturday, February 7, 2009

On Chemo Round 3

(post by Tammy)
As much as we tried to fight it, we started Round 3 of chemo a little on edge. We were sad to have to go back early and being separated as a family again. Natalie is back in the same room she was in for the last round of chemo. I actually like the room because of the great view and since Natalie did so well Round 2 of chemo in that room. However, one of the nurses told us she wished they had given us a change of scenery since it is pretty hard to be stuck in the same room for too long.

Natalie is doing better than we expected with the eye drops. She is taking them pretty well. She actually drew a big picture of an eyeball and sticking her own hand-made eye drop stickers on the eyeball each time she gets one over with. She is counting down the days until next Tuesday when she is done with them for good for this round of chemo.

I can tell that she is more tired starting this round of chemo because she slept in until 9 am Friday morning. I don't know if it's because she was more active when she was at home this round of chemo or because of the higher dosage of medication she is getting. She and Sean played non-stop together all day long when she was at home. They built a cave under the sleeper sofa, painted, wrote a story about their special stuffed animals, and even wrestled. The wrestling didn't go well with me. I put and end to that right away and had to remind both Sean and Natalie that Natalie is still in treatment and both had to be careful.

On Friday, I felt really down because right when we got up, the flow of visitors began. It was overwhelming. First, the custodian came in without knocking to empty our garbage. Then, the food server barged in with our tray of breakfast. After that, a nursing student came in saying that she and her instructor were helping out our nurse with Natalie for the day. Then, our patient care assistant came in with a guy that he was training for the day. The nutritionist and social worker came in after that. Then, the hospital chaplain came in with another chaplain. I lost it around 2 pm because at that point I could tell that even Natalie was overwhelmed. When the nursing student asked me if there was anything we needed I told her, "Yes, we would like some peace and quiet!" I felt bad but the crowd did leave us alone after that.

There were two visitors that day that did lift up my spirits. They came and gave instead of asking me a million questions. The first was Yolanda, Natalie's first year medical student buddy. She gave me time to go out for a nice walk while she painted and played with Natalie. She even played "elephants" with Natalie and her 8 stuffed elephants, talking in little elephant noises with Natalie. I love it. I can tell Natalie likes her a lot because she let Yolanda take one of her elephants home for a sleepover. The only condition was that Yolanda had to write her a story about everything Elloro did while he was away. The second visitor was Christina, one of the nutritionists who comes and plays with Natalie. She let me go out to take a break too while she made valentine hearts with Natalie for an hour.

We are hanging in there. We definitely need continued prayers for strength to get through this and prayers for Natalie to respond as well as she did last round of chemo. That was a miracle round for us!

Love, Tammy

Wednesday, February 4, 2009

How to Help

(post by Maritza)
There is a wonderful book entitled "Childhood Leukemia" which really is a guide for families, friends and caregivers to read. It has some great tips for families and friends who are supporting a family who is fighting leukemia. I thought I would pass on some of the tips for us all as we learn to support the family.

1. Do not say, "Let us know if there is anything we can do." It is far better to make a specific suggestion instead of asking for directions from tired parents. Suggestions could be, "I have time to drive out to the hospital today. Can I bring anything you need from the house or anything your child is craving?"
2. Do not do or say things that require the parent to support you.
3. Do not talk continually about the cancer.
4. Do not ask "what if" questions. The present is really all the parents can deal with.
5. Stories of children you know who have survived leukemia and are doing fine are welcome. Stories of those who have died or who have long term side effects should not be shared.
6. If you are local, you can also stay in touch with those who would coordinate meal/errand/chore support for when the Nakatanis return home. (However, they have only been home as a family for less than 10 days total since Thanksgiving, so this is not in full swing at this point.)

Also, for those who can't help with day-to-day activities, but really really want to help, these are things that you can do for Natalie. This is what Natalie's main treating doctor asked to pass on to people who would like to help in some way. Most of you are already helping so much, so this may not apply to you:
1. Donate blood. Even if you are not a match for Natalie, you can still say that the blood is to be credited to Natalie N______ (give her full name) at UCSF. They will actually credit Natalie's medical bill. The blood banks are really low and the blood that you donate can save a child's life. You can donate blood anywhere, not just at UCSF.
2. Donate platelets. Unlike donating blood, you can actually donate platelets every two weeks.
3. If you want to take an extra big step, get your blood type tested to be included in the registry for bone marrow transplant donors.

Love, Maritza

Tuesday, February 3, 2009

And back to the hospital again...

(post by Grant & Tammy)
It has been confirmed that we will be going back to the hospital this Thursday morning to start the third round of chemo. The doctors did not think that Natalie's body was going to respond so quickly. They said this usually does not happen. Again, they are amazed that her counts went up so much since Sunday. They convinced us that with leukemia, it is best to hit it hard when it's down. Since Natalie's body is recovered from the second round, they want to start the next round.

We are a little sad to go back to the hospital earlier than expected. Well, at least Natalie is okay with it. She has become quite a superstar with her loyal posse of nurses, doctors, nutritionists, social workers, teachers, and child life specialists. What seven year old wouldn't want to go back to a place where there is a long waiting list of nurses fighting to attend to her? She has nurses who bring her candy, blow kisses at her, and tell her that they will miss her until their shift starts again next week.

We are a little scared of this next round too because it will be higher dosages of the chemo in shorter periods of time. Instead of IV given over 4 hours, it will be IV given over an hour. She will need eye drops every 2 hours to protect her eyes because the chemo is secreted there when given in high dosages. She is going to really dislike that.

We ask for prayers that this round goes as well as the last round. We also ask for prayers that her body does not incur any damage from the chemo, but gets stronger and healthier than before. She has 2 more rounds after this third round.

Monday, February 2, 2009


(post by Tammy)
There is truly no place like home. We've been home for only one day and I feel more normal already. l love being able to cook something in my kitchen instead of eating sad looking hospital food or restaurant take out. This morning, I made omelettes for breakfast and realized that it's been so long since I've cooked anything. Sean must miss cooking too because he begged me to make cookies with him. We decided on something less ambitious and ended up making cereal treat bars at Natalie's request. Natalie and I made jello tonight. It was wonderful. I love sleeping in my warm bed instead of an uncomfortable convertible vinyl chair. I love uninterruped time with my family, without nurses, doctors, teachers, volunteers, social workers, nutritionists, the custodian, the linen guy, and cafeteria workers barging into our room every minute. Yes, there is no privacy at the hospital. People come in all day long. Some knock and some don't. Most of all, I love having both kids jump into our bed in the mornings.

We've become a hospital family. On the weekdays, Grant comes from work with briefcase in hand and announces, "I'm home!". We normally eat dinner with Natalie at the hospital together (really not, because Sean isn't there) before he goes home to tuck Sean into bed. If we have help from family, sometimes we are lucky to both stay with Natalie for the night or go home to rest together. On the weekends, we chase Sean up and down the hospital hallways trying to burn energy off him.

We were told that if Natalie recovers faster, we could have more time at home. This may not be the case. Natalie is doing so amazingly well with her second round of chemo and today her ANC is 700. Her platelets are at 800,000. The doctors are so pleased and so are we. The only thing is that because she is doing so well, they think she could hit 1,000 Wed or Thursday and are thinking of having her start round 3 of chemo this Thursday. To start chemo, her ANC has to be 1,000 and platelets have to be 150,000. We are hoping that they will give us the gift of time as a family and wait until next Tuesday as was planned. We will know the definite answer tomorrow.

Of course, we want her counts to continue going up incredibly as they have been doing. Please don't stop praying for that.
We are enjoying our time home as a family. It is truly bliss.

Love, Tammy

Sunday, February 1, 2009

Guess what!?!

(post by Tammy)
Woohoo! Natalie is coming home! Her ANC is 230!

Please pray that she gets no fever or infection during her days at home before her next chemo treatment. Thank you!