Natalie's Angels

Day 130

2010-09-13T19:02:00.000-07:00

Wow, I can't believe that it is really Day 130 since transplant. Please forgive us for not updating as much as we've wanted to on this blog site. I think Natalie's Facebook page has been giving everybody the latest updates via posting from our friend Maritza.

For those who are not following Facebook, the latest biopsy done 8/31 is showing .17% leukemia in Natalie's marrow. The biopsy done 8/3 originally was 0 %, but got amended to .2 %. The numbers are going down and we hope it will go down to 0% this month! When Natalie left the hospital on June 26, she was at 2% so .17 is definitely better.

We are enjoying and cherishing our time at home. We took the kids to hang out at Half Moon Bay this past Saturday. Natalie said she had the best time ever since being discharged from the hospital. It made her forget that she was on isolation precautions. She got to walk on the beach with Sean and collect sea shells. When the tide got low near the evening, they found tons of shells that were covered earlier by the ocean. Natalie made a necklace with the shells she found. Sean still has his in a ziploc baggie.

Please keep praying for us. It feels like there is always a twist and turn in this crazy journey we are on. Natalie's platelets were really low today so we are little concerned. We'll know a little more on Wednesday after the blood draw what is going on with her body.

Day 81- Time At Home

2010-07-26T21:11:00.000-07:00

We've been at home since my last post. Sorry we have not been keeping up with the updates as much. It's definitely more busy at home with all the normal daily responsibilities we have with both kids on top of all the medical stuff we have to do with Natalie.

Natalie has been doing good. She has her moments where she really gets sad and upset that she can't go out and do everything she wants to do, but she is learning how to live within the health boundaries that have been drawn for her. When she doesn't have to go to a doctor's appointment, she spends her days reading, playing on her iPad, and playing in the backyard. We did take her for a walk at the Lafayette Reservoir a week ago and she wanted to walk the entire 3 miles. We had a major battle with saying no to her. Looking back, it made me almost cry to see her walk up and down the hills as if she never had a transplant. I hated having to tell her that she couldn't exercise, but I did not want to be responsible for sending her to ER for pushing too hard. It's hard to believe that a couple of weeks ago she could barely walk around her hospital room.

The biggest highlight is we got to celebrate Natalie's 9th birthday at home with family last Tuesday. We had a little treasure hunt, elephant pinata, and played with water balloons in the backyard. Natalie said she had a great birthday.

The most recent biopsy done 2 weeks ago still shows 2 percent leukemia. We started interferon shots on Natalie last Wednesday. We are hoping and praying that the interferon will produce a little graft vs. leukemia that will cure Natalie. We were afraid the shots would be too much for Natalie, but she is handling it really well emotionally. Please keep us in your prayers that the interferon treatment that Natalie is on right now will cure her of leukemia. Sean said he really wants Natalie to not have to be hospitalized again or go to so much doctor's appointments. We want that too. Natalie has another biopsy next Tuesday and we need all your prayers that the results shows no more leukemia.

Day 55

2010-06-30T13:11:00.000-07:00

Natalie is home. It is wonderful having her at home. Sean was so happy to see her that he said, "I am so excited that I am trembling!"

Sean wants to follow Natalie everywhere. He is really trying not to be too loud or too wild since he understands that she is not as active as she used to be. He is like a little, loyal puppy. He asked if he could lay down on the floor of her room next to her bed when she is laying down. Natalie has more energy than we thought she would. We are trying to help her pace herself too.

Natalie will be home for the next two weeks if she does not have any complications or a fever. She goes in for a biopsy on July 14th. We are praying for a great time at home and the biopsy to look really good on the 14th.

Day 50

2010-06-25T14:17:00.000-07:00

I woke up sad, but really trying to enjoy my days with Natalie and feeding off her positive energy. Natalie is really focused on the positive parts of this stage. She is very excited about being able to leave her hospital room to walk around the BMT area, eating outside food, and going home soon.

We had a great night yesterday. I have not seen her this energetic and happy for a long, long time. She wanted to go outside her room for a walk. It was the first time she was able to walk outside of her room since her admission 2 months ago. She had on her silk colorful pajamas night gown, striped leggings, a rainbow hoodie, purple fuzzy slippers, and a mask. Her eyes were bright with curiosity. She looked adorable. I felt bad for her because there was not much action out in the BMT area. There were 2 nurses out there making IV lines for patients. One of them told Natalie she liked her outfit. Natalie didn't say anything but was really interested in what they were doing. She stood there watching them and I could tell she was wishing one of them would ask her if she wanted to make one too. Her hands starting swelling up so she decided she wanted to go back in her room. When the swelling went down, she went out again.

Today her nurse gave her some lines to play with. She had the time of her life injecting saline into them.

Day 49

2010-06-24T19:13:00.000-07:00

We are staying hopeful and trying to be positive about the plan for Natalie. We hope everyone is too and praying for us with positive thoughts. We're not giving up praying for Natalie to be better!

Sean was excited that he could finally go into Natalie's hospital room today. He came to play Bingo and hang out with Natalie. Natalie's PoPo also came and made Natalie some soup and chow fun. Natalie can have outside food now since her counts are up. We are happy that her menu options have opened up. So is Natalie.

The doctors said they do want Natalie's body to get GVLD (Graft V. Leukemia Disease) so that the new cells will fight the cancer cells. Please pray it will get rid of all the cancer and for Natalie to get better.

Day 47- Please Pray for Natalie!

2010-06-22T14:03:00.000-07:00

We are in shock as I am typing this so I hope my writing makes sense.

I woke up this morning happy. Glanced over at Natalie and she had her mouth slightly open as she was sleeping. She looked so peaceful. Got her counts for today and WBC is 1.9, ANC is 890.

Then, we got smacked with bad news that Natalie's final biopsy report shows 2% leukemia. Big lump developed in my throat and my heart raced. Grant and I met with the doctors and I was still in shock during the entire meeting. Everything was pointing to things getting better... I don't understand.

There is a plan, but we need every single person we know to please pray for it to be successful. The plan is for Natalie to get off one of the meds she has been on. It's called cyclosporine. The hope is that getting off that will help her donor cells grow enough to fight the leukemia. The risk of getting off that is the chance for Natalie to get Graft Vs. Host Disease (GVHD), which is dangerous. Here is what we need all of you to pray for with all your heart and everything you've got:

1. Natalie's donor cells to grow like wild fire to beat the leukemia cells and wipe them out.Specifically, we need her lymphocytes to grow and her leukemia to not grow.

2. Natalie to not get GVHD.
3. For this plan to cure Natalie and we can be done with this.

Please pray for us.

Day 45

2010-06-20T19:04:00.000-07:00

We are having a great Father's Day. Grant woke up happy because Natalie's ANC is 610today. Sean and I got to spend some time together this morning. Sean said he had a good day because he got to see Natalie and she was not asleep during his visit today.

Grant asked the doctors more questions today and got clarification about going home. Natalie gets to go home after her counts hits 2,OOO, she starts eating and drinking consistently, and she is able to take her medicines orally. Of course, this is all pending that the biopsy results tomorrow looks good too. Please pray for all these things for us.

Hope everyone is having a great Father's Day too!

Day 44

2010-06-19T21:02:00.001-07:00

Natalie's ANC is 480 today. Just 20 more and she can get out of her room for a walk around the BMT area, have Sean in her room, and eat outside food again. She can go home when she no longer needs transfusions, eats, drinks, and takes meds orally.

Natalie is doing okay. She is still feeling nauseous so she's been on the grumpy side.

We should get the final results from her biopsy on Monday. Praying it is great news confirming the preliminary results.

Day 43

2010-06-18T11:42:00.000-07:00

Natalie's ANC doubled to 320 yesterday. Sean did his happy dance again!

Today it is at 370. Yeah!!! Please keep those prayers going.

Preliminary results from biopsy looks good too. We won't get final results until next week.

Natalie is showing interest in eating again. She has moved on from turkey pot pies to Ritz crackers with cheddar cheese.

Biopsy Today- Day 42

2010-06-17T12:11:00.000-07:00

The good news first- Natalie's WBC jumped up again. They are at .7 today. We wanted them to be at .6, so we are happy it's higher. Still waiting to see what her ANCs are today.

The not so good news is that Natalie still needs to get a biopsy done today at 4:30 pm. They just want to see what is going on in her marrow. Natalie is not looking forward to that procedure. Please pray for us that it goes as well as last time. That one was great because Natalie felt no pain from the injection site and she was sewing and talking/laughing right after that. Also, please pray that the results are great too- no leukemia in her marrow.

Sean's note

2010-06-16T09:25:00.000-07:00

Sean just wrote a note for Natalie. He handed it to me to give to her today. It made me cry. Here's what he wrote:

I wish natalie to be beeter. her counts to go up to 500! so i can go to her room.

On the back of the note, he drew a picture. There are words next to the picture that says, "Mr. Cloudy. He fights bad guys with his teeth."

I told him Natalie's ANC count is 160 today. He did his happy dance.

Day 41

2010-06-16T09:05:00.001-07:00

Guess what? Natalie's WBC counts went up to .4 AND she finally has some ANCs! Grant texted me at 7 am this morning with the good news. We are so happy!! We are so surprised because we thought for certain there was no chance for her counts to go up at all now this week due to the antibiotics they started on Natalie yesterday. Those normally suppress and slow down her counts. Please continue to pray those counts keep climbing.

Sean's journal helped me last night in my sadness. We decided to read his school journal for his bedtime story last night as a special treat after having a hard day. Sean loves sharing his journal with everybody. He is very proud of it. His entry on May 25 reads, "Im watering my papas patatos. Dont focus on it to much siad papa. He is smart." Sean laughed when we read that together. There is a picture he drew showing himself watering the plants. It made me think of Natalie's counts and how I need to stop focusing on them too much if I want them to grow. I need to just pray for them and let them grow on their own.

Days 38, 39 & 40

2010-06-15T21:16:00.001-07:00

It's been hard the past couple of days with Natalie. She still is feeling nauseous and her counts are not going up the way the doctors want to see them go up. They went up a little Sunday, but went down again Monday. To make things worse, she spiked a fever at 5 am this morning. They started more antibiotics on her today so I'm losing hope that she will be able to go home this weekend. Yes, some optimistic part of me was really hoping that her counts would soar and we would all be home to celebrate Father's Day together.

They are scheduling another biopsy this Thursday just to check her marrow again. Please pray for the biopsy to go well and for the results to be good. What we want to see is no leukemia and the donor cells grafting in her marrow!

Natalie is happy with her Auntie being here. She said she had a good day today with Natalie until I walked in the door. Natalie was happy and talkative until 5 pm when I showed up. I hope she was being fussy because of the Benedryl, and not me.

Good news for our family is that Sean graduated from Kindergarten on Monday. We are so proud that he finished out the year despite all our fears about him getting sick and passing on the germs to us. Due to his wonderful teacher and the great volunteer parents who sanitized the tables EVERY day for Sean, Sean did not get sick once from being at school. I'm seeing that it does take help from everybody to get our family through this hard time. Sean is very excited about moving on. In his own words, "behold first grade!"

Days 36 and 37

2010-06-12T22:28:00.000-07:00

Still waiting for those counts to go up. No ANC yet. :-( Natalie has not feeling the greatest the last few days. She has been nauseous. We think it's from eating again after not eating much. We're trying to have her snack throughout the day instead of eating just one big meal.

Please pray that her counts go up to at least .5 and there are some ANC so she does not have to get another biopsy on Thursday.

Day 35

2010-06-10T19:05:00.000-07:00

Natalie's counts are the same as yesterday. She is having a tough day today because of her nausea. She didn't even play Bingo, which really means she is not feeling good. Natalie does not miss Bingo for anything.

We're hoping the nausea is from eating again after not eating much. Also, praying those cells are grafting and growing.

Day 34

2010-06-09T15:03:00.000-07:00

I jumped out of my bed when I heard that Natalie's counts moved up a tiny bit today. It's just one point up, but I was so happy to hear that it went up. We'll take it and celebrate. Of course, we need it to go up 500 more than that number. Please keep those prayers going for us with the counts going up. We are hoping that the number will increase greatly tomorrow and keep going up. We really do not want her to have to do another biopsy next Thursday. They will have to do that if her counts are still down.

Natalie is doing well today. She is playing with her iPad right now. She's been eating the a little bit of some turkey pot pie every day. She says it's like eating biscuits with gravy. She is also interested in drinking liquids again.

Day 33

2010-06-08T12:19:00.000-07:00

The final report on the DNA is good. She does have 90% donor cells in her marrow. We're still waiting on the report about her blasts. Please pray that is good too. We really need those donor cells to multiply this week!

We are so happy to hear the news about the donor cells. Nobody has caused me so much worry in my life as much as Natalie has. I was so down this weekend because my heart was so heavy, full of worry. Sean was the only one who could cheer me up a little. He made me smile when he prayed Saturday night for Natalie. At the end, he added, "Thank you God for giving me a great day." I asked him what made his day great and he said it was because he got to spend some time playing with his papa in the morning and spent the whole day with his PoPo. It made me realize that even though my day was hard, Sean's day was great. That means the day was okay.

Yesterday's news was what we needed and we keep praying for more good news. Thank you so much for all your prayers.

Natalie is sleeping right now. She just got some Benedryl and platelets so she'll be asleep until probably 2 pm.

She is also starting to crave meals (turkey pot pie, chicken noodle soup, etc.) besides snacks. They are starting to taper off her IV nutrition little by little as she starts to eat more.

Days 30, 31 & 32

2010-06-07T15:06:00.000-07:00

Weekend was emotionally challenging as far as worrying about the results today. We still do not have the final reports, but the preliminary results look good. They are seeing donor cells in Natalie's marrow, which is what we all want! We just need the final report to confirm that. We are also waiting for the final reports to confirm there are no leukemia cells in her marrow. Please continue to pray for those reports to show good news and those counts to go up. Counts are still at 0.

The biggest excitement for the weekend for Natalie is that Kids Strong gave her an iPad. They want her to test it out and get her feedback on the iPad for kids in her situation at the hospital. So far, Natalie is in love with it. Sean is in love with it too. He got to play a little with it at home before we gave it to Natalie. He understands though that Natalie needs it more than he does right now because she is stuck at the hospital. The only bad thing Natalie has to say about the iPad is that it is a little slow due to the WiFi here at the hospital. She can't wait to take it home and really see it in action. She will write up her own report on it and submit to Kids Strong herself.

Day 29

2010-06-04T11:53:00.000-07:00

The biopsy procedure went really well yesterday. It was a little bit exciting for Natalie to be able to leave her room. However, she did wish it was for something fun instead of a biopsy. They covered her entire body and Elley (her elephant) with a white sheet to protect both from germs so she couldn't see anything. She did hear people saying, "Hi Natalie" to her as they rolled her down to the surgery floor. She woke up pretty quickly from the biopsy and did not have any pain from the procedure. We were grateful for that.

It also made Natalie's day to get a taste of Hawaii from an old family friend, the Changs. They brought us macademia nuts and beautiful cookies from Hawaii, along with tons of other gifts. The cookies were all individually wrapped which made them perfect for Natalie to eat. Thank you Arleen and Spencer!

We are just waiting for the results now and praying that we see donor's DNA in her marrow. Also, praying for those stubborn counts to go up.

Biopsy Today

2010-06-03T08:40:00.000-07:00

Today is Day 28. Natalie woke up at 6 am wanting to know what her counts are. She woke me up as she was talking to her nurse. We both really wanted good news that her counts are here. We're sad because they are still at 0. She is heading into her biopsy in a few minutes.
It's really hard. We're tired, discouraged, and sad. Have to pick ourselves up and keep going in this battle. I have to keep putting our hearts out there for prayers because we love Natalie too much to quit and mope.

Please pray biopsy goes well and the results are great. We want to see the donor's DNA in Natalie's marrow.

Day 27

2010-06-02T19:00:00.000-07:00

Biopsy is scheduled for 9:00 am tomorrow. We will know for sure around 6 am if Natalie needs to get it done. Counts are still not moving. She needs to have at least 3 or higher count to not have to do the biopsy.

Please pray for us! I will let you all know tomorrow morning. If we do have to do the biopsy please pray the procedure goes really well and they can see the donor's DNA in Natalie's marrow. We are all not looking forward to it because Natalie has never had to do a biopsy with counts being at 0.

Day 26

2010-06-01T19:17:00.000-07:00

Natalie got up at 6 am this morning full of energy. She quietly played her DS until I woke up. I realized her counts were still 0 because the nurse would've rushed into the room to tell me the good if her counts were up. I didn't even ask and just started my day trying not to fixate on that. Natalie and I sewed together and watched tv. She didn't feel like having any visitors today, except Yolanda managed to sneak in. Natalie was okay with that because Yolanda makes her laugh and she likes giving Yolanda a hard time.

She was ready and waiting for the doctor to come in today. This is a first since she dreads the daily examinations. They didn't come in until 1:30 and the first thing out of Natalie's mouth was, "Why are you so late today?" I think she was curious to know what they were going to do about her counts not going up. She wanted to know Plan B and Plan C, if any.

We are really hoping and praying we never have to execute Plan B because Plan A is working even if we don't see the cells growing yet. Still at zero, but we know so many people are praying. There is always magic when that happens.

Days 24 and 25

2010-06-01T00:14:00.000-07:00

Hi Everybody-

We really need everyone to pray really hard for Natalie's counts to go up tomorrow or the next day. She's still at nothing, which is worrisome. The doctors say if she is still at 0 on Thursday, they will need to do a biopsy to see why her new cells are not growing.

It makes me sick to my stomache to think that something could be wrong and her new cells are having problems grafting into her body. Trying to stay positive, but this waiting and waiting is so hard!

Tonight, Sean and Natalie were talking on the phone to each other. It was really cute to hear their conversation. Sean wants Natalie home soon and so do we.

Days 22 & 23

2010-05-29T21:58:00.001-07:00

After a week of eating nothing, Natalie is showing interest in food again. She had some crackers with cream cheese yesterday and today. We are trying to not push food on her because we don't want her to get sick from the food. She is also more energetic today. She got up and sewed an outfit for her elephant, watched a little tv, and played DS with Sean for a bit.

Her counts are still at 0. She has a virus in her bladder that probably won't go away until her new cells develop. It doesn't seem to bother her much, but please pray that it doesn't grow to cause any complications for Natalie.

Despite all this, we have been told by the doctors that she is doing well. All of us are really hoping that her counts come up starting tomorrow. Please continue to keep those counts in your prayers for us.

Days 17, 18, 19, 20, & 21

2010-05-27T10:47:00.000-07:00

I can't believe it is day 21. Natalie is doing okay. They changed one of her meds to a stronger version. Her fever broke on Sunday. She still has headaches on and off, but seems to be doing okay once they give her pain meds for the headaches.

We are hanging in there waiting for those counts to go up. Still no signs of that happening yet.

Days 14, 15 & 16

2010-05-22T19:13:00.000-07:00

Days 14 and 15 were good. Natalie had a little headache, but was happy and playful.

Last night she came down with a fever again. Today is not so good. She's been asleep most of the day and she feels yucky. We are asking for prayers that the fever is just a result of her new cells grafting in and that her counts will start going up in the next few days. Also, please pray for the infection in her urine. It's still lingering.

Days 12 & 13

2010-05-19T20:45:00.000-07:00

Still waiting for those counts to go up. Still at zero. Sigh.

Doctors said Natalie's infections are under control. They are certain the strep infection is not in her line, which is great news. Thanks for all your prayers about that. They said she is doing well in this phase of transplant so we want to hold on to their optimistic perspective.

Natalie has been busy with family visitors. Auntie Tracy came to visit for a couple of days and spent two nights with her. Her Gran and Gramps are here now. She is really enjoying their company.

We are going to have Sean come to the hospital to play Bingo with Natalie after school tomorrow. Hopefully, it's a good one!

Days 10 and 11

2010-05-17T11:12:00.000-07:00

Natalie was not in a good mood yesterday. She woke up with a terrible headache so her play time with Sean did not end up too well. They played Mario Party again and lost. Sean cried. Usually, Natalie would comfort him but she was upset too.

Headache went away after they gave her some blood and a little medicine. She was happier and talkative. She ate a little and watched tv.

Natalie woke up this morning with another bad headache. It's gone now, but we are watching it closely. She's comfortably playing her DS. Also found out this morning that she has a third infection. It's showing up in her urine sample and microscopic. It doesn't seem to be bothering Natalie. For now, we are watching that closely as well. They really don't have a good medicine to treat that one so that one worries us more.

It's very gloomy in the city today. We don't like it that Natalie has so many infections going on at the same time. We're glad she is doing well in general despite the multiple infections. Just praying for them to all go away and for those counts to grow.

Day 9

2010-05-15T21:05:00.000-07:00

Natalie is in a great mood. She is talkative, energetic, playful, and happy. It's strange to see her this way especially since she is still fighting the two infections. We don't know why she is so happy, but we are really enjoying her good attitude and hope she stays this way.

Sean and Natalie played Mario Party together at the hospital today. Sean was outside of her room, but it was fun to hear them talk and play together. They were a team so every time they won, they both would say, "We're really good at this!" When they lost, Natalie would console Sean by saying, "Don't worry Sean, it's going to be okay." It was really sweet. They both don't like losing, but Sean expresses his sadness more than Natalie when he loses. She knows that and she does try to make him happy when she can.

Please continue to pray that the C Dif and strep goes away and she doesn't have any complications. Also, need those counts to start going up!

Day 8

2010-05-14T21:01:00.000-07:00

Natalie does have C Diff and strep. They did catch both early yesterday and started antibiotics right away so we are hoping and praying both will be gone quickly and that the strep is not in her line. Natalie asked me to post those specific prayers on her blog for her.

C Diff possbily came from taking too much antibiotics in the past. The strep is still being tested to see what strain it is. We are hoping it is not a line infection because that complicates things for Natalie.

Doctors said that both are very common for most patients here because of their low immune system. They are surprised that Natalie has never had C Diff before. Everyone is vigilantly on top of treating both so we are hoping Natalie will be better in the next 24 hours.

Natalie was energetic and talkative today. She doesn't look like she has any infections at all. She's been pretty social with her visitors. She was smiling when I walked in this afternoon and she ate a whole cup of peaches.

Days 6 and 7

2010-05-13T19:07:00.000-07:00

Day 6 went very well. Natalie ate more, read, and worked on her book project with her hospital teacher.

Day 7 started off well too. Natalie made some bracelets, worked more on her book project, and painted. At 4 pm, she came down with a fever. They started her on some antibiotics. I know this is to be expected and most patients come down with fevers around this time. We still worry though. Please pray for her fever to go away and Natalie does not have a bad infection.

Day 5

2010-05-11T11:23:00.000-07:00

Natalie woke up on the grumpy side because the IV machine was beeping all night. She was better after organizing her palette of colored pencils to prepare for her drawing project today. She is in a good mood.

Thanks for all your suggestions and recommendations for books. We love recommendations from other readers.

Counts are low as expected, but Natalie is feeling good. No hives today. She also ate a little bit of Trix cereal with milk this morning. Hopefully, counts will go up soon!

Day 4

2010-05-10T15:33:00.000-07:00

Hives not so bad today. The doctor thinks the hives are from the chemo she had prior to transplant and is not too concerned about it. She said they should go away eventually. We can still see them, but they don't seem to be bothering Natalie as much as they bother us to see them on her.

Natalie ate some ramen noodles and pineapples today. I'm so glad she has not lost her appetite for food completely. When she was waiting for the ramen to cool down, she smiled and said, "Yum, that smells sooooo good." She is still on IV nutrition to assist with her nutritional needs until she starts eating normal meals again.

She read her book for 2 hours this morning and played a little DS. She read the whole City of Ember series and finished the last book today. We need to think of some good new stories she will like. She has read practically every children's chapter book out there--Judy Blume, Beverly Cleary, Nancy Drew, Roald Dahl, Judy Moody, Diary of A Wimpy Kid, Little House, Kate Kazoo, Box Car Children, Rainbow Magic Fairies,etc. I started skimming through "The Mysterious Benedict Society" to see if the story would appeal to Natalie. It's a little interesting so far. I just have to sell it to her like I did with "City of Ember" and "A Little Princess". Sometimes she doesn't care if I like it. That was the case with "From the Mixed Up Files of Mrs. Basil E. Frankweiler". I loved that story and told her the characters reminded me so much of her and Sean. I even showed her the Newberry Medal on the book. She didn't care and just said she didn't want to read it. Then she told me the medals on books only means that the adults who give the medals out like them and it doesn't mean that kids will like them.

They are giving her Benedryl around the clock to keep her hives at bay so she is sleeping right now.

I can tell Natalie is starting to get bored. It's okay. I would rather take boredom than excitement any day back here in the transplant unit. Natalie said the most exciting day so far back here is hands down the day of her transplant.We hope that stays the most exciting day until we leave here for home.

Day 3

2010-05-09T18:40:00.000-07:00

Hives are back. We're trying to figure out what is causing them and if Natalie is allergic to one of the medications she is currently receiving. Other than that, Natalie seems to be doing okay. She is reading right now. She also ate some canned pineapples.

For this week, we need lots of prayers for: (1)her new cells to graft and grow, (2) no infections, and (3) for the hives to go away.

Spent Mother's Day morning with Sean and now spending the evening with Natalie. It's been a nice, relaxing day. Trying to make the best of it, but it is sad to be apart on holidays.

Day 2

2010-05-08T13:32:00.001-07:00

Grant just has allergies. Thanks for all your suggestions. His symptoms are sporadic and they go away immediately when he puts a mask on. We are happy that he does not have to stay away from Natalie.

Natalie is doing good. She goes back and forth between reading and watching tv. The watching tv part is so uncharacteristic of her, but she does love to cook and watch cooking shows. She's addicted to watching Top Chef right now. We don't have Food Network at the hospital, so the only cooking DVD that I could find that she hasn't watched is Top Chef. She rejected it at first, but now she can't stop watching it. I don't care for the language in it for Natalie, but it's all censored out. One of the nurses suggested Top Chef Masters for her and now I'm on a search for the DVDs for her.

Her hives are all gone. She is nibbling on things, but not really eating full meals yet. They have her on IV nutrition.

I discovered a cool resource today since the washer is broken in the hospital. There is a laundromat down the street from the hospital that offers same day laundry service (wash & fold). So happy about that since Natalie will never let me take her favorite rainbow blanket home overnight to wash. She can't sleep without it. I'm also happy that I don't have to deal anymore with waiting in the long lines for the washer to free up at the hospital!

Day 1

2010-05-07T15:49:00.000-07:00

Natalie is doing well so far today. She is a little tired, but she has some energy. She woke up this morning and read until noon. Then she wanted me to read to her for the next two hours while she rested her eyes.

She is not up for visitors yet, but will allow her favorite medical staff people to come in to say hello. She played a little more with her laminating machine this afternoon.

Grant came down with a runny nose again. Natalie is sad he can't come near her and I'm sad too. The nights are rough back here in transplant unit because the medicines they give her causes the machines to beep constantly. Nobody sleeps except Natalie because they give her Benedryl. The good thing is that she can sleep through anything. Even after being woken up to use the bathroom every two hours, she goes right back to sleep. Hmmm, maybe I should take some Benedryl? At least Natalie does not have to use the restroom every two hours anymore as she did a couple of nights ago.

Transplant Day

2010-05-06T16:57:00.000-07:00

Thanks so much for all of your prayers. The transplant went well.

Transplant occured at 1 pm today. We thought it would be a two hour infusion, but it was done in less than 15 minutes. I think it took 10 minutes, but we weren't paying too much attention to the time. There were 5 medical staff standing around Natalie to watch for any bad reaction. They hooked her up to the monitors like they have down in ICU so we were getting a little worried. A couple of minutes after the transfusion, the doctor calmly said, "Well, if she was going to have a reaction, she would've had one by now. It looks like her body is saying it's okay with the new cells."

Natalie was curious the entire time. She asked a lot of questions and was staring at the bag that contained her new cells. She was worried about the smell of the preserved cells because everyone said it's the worst part of the transplant. However, she wasn't bothered by it at all. She said it smells like mango sorbet. I think it smells like clam chowder. It was a tiny little bag so it's hard to believe that the cells in there are actually going to take over her entire body and replace her old cells.

Natalie has been moody today. She's on one medication that made her so angry this morning. They gave it to her to help with her hives, but said they are stopping that today. She seems more like herself now. She ate a bowl of cinnamon Life cereal this afternoon.

Since it was Natalie's second birthday today, we got her a small laminating machine. She has been asking for one ever since a certain special friend gave her the idea. She is happily playing with it now.

So, now we wait and pray that her new cells multiply and grow. We pray that it attacks all her leukemia cells and does well growing in her body.

Natalie will start feeling a little icky the next couple of days as her new cells grow and the aftermath of the chemo inside of her. We are hoping she sails through this rough part and her counts start to recover quickly!

Day -2

2010-05-04T17:17:00.001-07:00

Natalie is having a better day today. The past few days have been rough in regards to her nausea. Thank goodness she is done with the medicine that made her nauseous. She has hives and had a low fever from the chemo medicine she is getting now. She doesn't seem to be bothered too much from the hives. The fever went away today. She has been playing her DS to pass the time here. They said the hives are caused by her allergic reaction to the medicine, but they should go away Friday. In Natalie's words, "This medicine is not as bad as I thought it was going to be." It's the medicine that everyone has been informing her would make her really sick.

It has been so hard for us to see Natalie sick like this. She hasn't eaten anything since last Friday. Again, I think it's harder for us than for Natalie. She seems to be doing okay and is comfortable.

We can't believe the transplant is 2 days away! Thank you for all your continued prayers. Please pray for Natalie's body to do so well with the transplant.

Day -5

2010-05-01T14:02:00.000-07:00

Natalie started a new medicine today that is making her feel more nauseous. She threw up twice this morning. She's feeling so bad that she didn't even want to socialize when Yolanda visited.

She did eat a chicken quesadilla yesterday and was talkative with her visitors. She played a little too yesterday.

Today, all she wants to do is sleep. It's hard for her to walk due to the nausea and she definitely does not want anything in her mouth. She also cried today because she said she misses playing with Sean. Grant is bringing Sean to visit in a bit, but he is not allowed to come into Natalie's room. There is an ante room that he will stay in while he visits. He and Natalie can see each other and hear each other. There is just a glass pane between them that serves as a barrier against any viruses that Sean may have.

I'm not sure how things will go on Monday when she gets the third medicine which is expected to make her feel awful. We've been praying for Natalie to have strength through this. Please pray for us specifically that Natalie will have the strength to get through this and have a successful transplant.

Day -6 Transplant

2010-04-30T12:34:00.000-07:00

Okay, I'm going to start counting the days the way that I should. This is actually -6 day until transplant since the transplant is 6 days away. Natalie had a great day yesterday with a lot of visitors. Appetite and energy was up. Grant and I are usually really tired when Natalie's energy is up because she has helping her with her different projects. The biggest one has been decorating her new room, which is a jungle/animal theme this time. We have some action going on so far with origami cranes flying and elephants marching around the room. Of course, there are a couple of rainbows too. There's still a lot of work to be done though.

Last night, her heart rate started creeping up from normal. It worried us a little, but it was not dangerously high. Also she is starting to feel nauseous today. Sigh. We were hoping that she would maintain her hearty appetite until May 2nd, the date she is suppose to start feeling really really bad.

Please continue to keep us in your prayers for Natalie to have a successful transplant. I can't believe it's next Thursday. Some people call it their second birthday and some take pictures of it. Not sure what we will do and if Natalie will want us to take pictures.

Bone Marrow Transplant- Day 3

2010-04-28T11:29:00.000-07:00

Wow, has it been over a month since our last posting? We've been busy with tests, procedures, and waiting for results in preparation for Natalie's transplant. We also had a great 3 weeks at home together and did A LOT of fun things. Natalie's energy and appetite was good too.

This is day 3 since we've been admitted into the transpant unit. I'm probably counting it wrong since they do negative numbers until day of transplant and then postiive numbers after transplant. Natalie's transplant date is next Thursday, May 6. She will get some strong chemotherapy medicine leading up to that date to prepare for the infusion of her new cells on May 6.

So far, Natalie is in a really good mood, energetic, and has a healthy appetite. Eileen stopped by yesterday and commented that she has not seen Natalie this happy in a long, long time.

Natalie is in a good mood because of her curiosity and the novelty of being back in the bone marrow transplant unit. There are a lot of new rules since everything has to be completely clean and sanitized in her new room. Natalie is enjoying the sterile baths back here and the special mouthwash. She likes having sterilized water poured on her when she bathes and washes her hands. Maybe it makes her feel pampered? She also loves the fact that she no longer has to brush her teeth with a regular toothbrush since she has a special mouthwash. Boy, does she love that special mouthwash. She said it's the best thing she's ever tasted and wants to use it every time after she eats something. However, her absolute favorite part of being back in the hospital is the new room service menu they have for meals. She's been using that service a lot too. I'm learning from Natalie that kids do look at things so differently from the way adults look at things. Their view is better than ours.

We know the novelty of all this will evenutally wear off so we are enjoying the good days now. We've been told that Natalie will start feeling really yucky on May 2. She'll stop eating and probably will be in bed more until her new cells graft in and grow. We are really not looking forward to that time. Neither is Natalie. She jokes that she will be in hibernation until she feels better.

Please keep us in your prayers for the transplant to go amazingly well and for Natalie's overall health to be well. We are on the road to curing her.

Counts Creeping Up

2010-03-28T20:47:00.000-07:00

Natalie's counts are slowly going up day by day. We were afraid that she was coming down with an infection last weekend, but she never got one. We are grateful for that.

Natalie has been in a happy mood and she is keeping herself busy. She is learning and exploring from her little hospital room. She recently won an award for the movie she made, she is now editor-in-chief of the hospital school newsletter, and she is staying busy with drawing. Her new mission is to find a portable microscope so that she can look at her own cells from her next biopsy. One of the doctors has been coming in whenever she is free to give her some medical lessons and she promised Natalie that she will teach her all about her cells under the microscope. It's interesting that she is also learning about the world from all the wonderful staff at the hospital who share with Natalie about their travels. One of her teachers just got back from Mexico and got Natalie a hand-painted beautiful treasure box with a hand-painted elephant. Another friend is going back to London to visit family next week. Natalie has asked him to bring her back a stamp for her new stamp collection. She is really excited that he may give her his old stamp collection if he can find it.

Natalie will most likely get a biopsy this week as her counts are going up. Please please remember to pray for the biopsy results to show that she is in remission! Thank you.

A Little Update

2010-03-15T20:32:00.001-07:00

Natalie has been done with chemo for almost a week now. It was a hard one for her physically and we were worried about her liver. She seems better now and is active again. She's still not eating the way she did the last round, but she is eating a little.

Her aunt and uncle are here for a couple of days to take care of her at the hospital so she is happy. They are working on building a dollhouse together for her Polly Pockets. It's made of wood and looks really great so far.

Please continue to pray specifically that her leukemia is in remission after this round of chemo!

Important Prayer Request

2010-03-03T19:18:00.000-08:00

Natalie started her second cycle of chemo today. We really need all of you to please pray that this cycle of chemo will get her cancer into remission. Natalie needs her body to be in a good remission in order to have a successful transplant so it is super important to us that you are all praying for that. Please also pray that she does not get a bad infection or any complications as this chemo will hit her immune system hard again.

We feel very grateful that we were able to spend 5 days together as a family from Friday-Tuesday. Natalie was so energetic so we were able to do a lot together. Natalie played in the backyard, had some adventures with Sean, and finally got to go to Tiffanys to pick out something with all the money she made selling bracelets. Of course, we had to call the store first to explain our situation to make sure it was safe for Natalie to go inside. We didn't want her exposed to too many people because of her low immune system. The great thing was that they were so supportive. They made sure that there was not too many people in the store and had somebody showed Natalie around the moment she walked in. Natalie only wanted to go to the section within her budget so she didn't even want to wander over to the section to look at the diamonds. She's such a practical girl. It took her 10 minutes to pick out a silver heart necklace that she wanted to engrave her initials on. After she paid, they told us that it would take 2 weeks for her necklace to be ready. However, they really wanted her to leave with something since she's been waiting so long to go to Tiffanys, so they surprised us with two matching heart necklaces all wrapped up for Natalie and I to take home! They also gave Natalie a design book wrapped up in a beautiful blue box with a shiny white bow. It was an unforgettable shopping experience for Natalie and she's been telling everybody all about it.

Match Found!

2010-02-23T13:44:00.000-08:00

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.

Counts Slowly Going Up

2010-02-16T20:15:00.000-08:00

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.

Valentines Day

2010-02-15T10:30:00.000-08:00

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

2010-02-15T10:26:00.000-08:00

A good night, sneak peek, and food. 02.11.10

2010-02-11T21:14:00.000-08:00

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:
http://www.facebook.com/jackie
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.

===
FOOD!
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

2010-02-11T10:26:00.001-08:00

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.

Our Friday

2010-02-05T20:57:00.000-08:00

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.

Fever and Biopsy

2010-02-04T16:20:00.000-08:00

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.

More Rainbows

2010-01-31T16:12:00.001-08:00

I walked into Natalie's room today and there are more beautiful rainbows up. Natalie was happy and talkative. She asked us to bring her some penne pasta from Pasta Pomodoro with parmesan cheese and butter, and gulped almost all the plate of it down. She said she ate a little brunch today too.

I love the rainbows in her room. I love to see Natalie so happy and eating. She is happily reading a book now.

These are the days that I treasure in my heart.

Good Day Yesterday

2010-01-30T18:56:00.000-08:00

Yesterday was a great day for Natalie. Her gran and gramps came and helped her decorate her entire room with rainbows and hearts. They made paper dolls with her too. When I walked into her room that afternoon, she was beaming with joy and hope. She was so proud of the decorations and she was so happy that her grandparents came to spend time with her. She was smiling and happy. I haven't seen her like this since we got back to the hospital, so it was truly a gift for us yesterday to see Natalie happy.

Her counts are low, but they are suppose to go even lower in the next few days. We are scared and trying to face each day by day. We are also treasuring the good days.

Thank you all who are working so hard for the many bone marrow drives and getting people tested. We are grateful for all your kind hearts, your friendship, your support and your prayers.

In the Hospital

2010-01-28T10:17:00.000-08:00

As you probably all understand, we haven't posted much on the blog since we found out that Natalie has relapsed. It's been very painful that it hurts to even talk, write, and share our hearts. We've gone through many days of just sobbing and I know it needs to come out. As I am typing this now, I find myself crying. That's how heavy our hearts are with sadness. It feels like it our lives have stopped again, and we are in this strange waiting room begging to be able to rejoin the rest of the world again.

We don't understand why we are back here. What we do know is that we have a lot of love for Natalie and you all have a lot of love for Natalie. The Bible says that love conquers all and it never fails. If we could measure our love, would it be enough to cure Natalie? We are really hoping so. We are hoping it can move mountains and do miracles. It's the only thing we have a lot of these days. Our faith is a little low, our strength is low, and our joy is low.

Speaking of low, Natalie finished chemo two days ago, and her counts are low. This chemo medicine is really strong and is hitting her hard. She is getting some platelets today so the Benedryl has knocked her out. She is sleeping right now. We need prayers for her body to do amazingly well through all this-- no infection, no ICU, nothing bad.

When Natalie first heard got readmitted, she was so sad. She didn't really want to talk about her sadness. She was really enjoying being back at school, and looking forward to the class field trip coming up to the Chabot Space Center. We gave her some space because we felt the same way. Natalie and Sean were both sad. Grant and I were both sad and mad. None of us could believe this was happening again.

We've been telling her about the bone marrow drives that people are all working hard for. We've been asking anyone we see who is asian, or know somebody who is asian, to get tested and registered through the National Bone Marrow Registry. We've been sharing various stories to Natalie. We are all trying to fight through this and stay positive. Natalie is starting to accept being back here. I think we have accepted it too. She started to do some art again, she is finishing a book a day in the Boxcar Children series, she is laughing and talking to the nurses. She was willing to do Skype with Sean last night. Afterwards, she said that it was so much fun to do that. We talk about how much fun we had away from the hospital and we talk about the future. We want her to have a sweet future.

Thank you to all who are doing everything they can to get tested or getting people to get tested for Natalie. She is a unique person so we have to pray really hard that she will find a great match.

Today is Bingo day at the hospital and that always puts a smile on Natalie's face.

We Need Prayers For Tuesday

2010-01-16T22:00:00.000-08:00

Hi Everybody,

We really need all your prayers again for our Natalie.

Natalie had her blood draw and clinic visit to UCSF this past Thursday, and we were surprised to find out that her platelets have dropped significantly from her last visit. She has been so happy, energetic, and eating well. Looking at her, you can't even tell that there's been any change in her blood chemistry. We feel like a bus has hit us out the blue again and it's painful.

Of course, we've had sleepless nights filled with worry and concern over why her platelets have dropped. We try to not let our fears and thoughts get too out of control, but it is very scary to be in this position of the unknown again.

We've been told that the low platelets situation may be a result of her body fighting a virus. Her hemoglobin level is normal. We are really praying and hoping that is the case.

Natalie is scheduled to go back to UCSF this coming Tuesday, January 19 for a blood draw and a biopsy. They want to do a biopsy make sure that the cancer has not come back. Please please pray a special prayer for us that day that the biopsy shows no signs of cancer at all.

Natalie is a little scared too. She's trying to stay positive and we are trying to hold it together so that we can help her be strong through this. We had a fun day together as a family hanging out.

Really, we can't go through again what we went through last year. It took everything out of us physically, emotionally, and spiritually to make it through. We are starting to feel like normal people again and we would like to continue to recuperate.

Grant's Pre-Thanksgiving post (sorry it's late!)

2009-12-06T22:00:00.000-08:00

Give thanks to the Lord,
For he is good.
Give thanks to the Lord,
His love endures forever.

Over the past week, we've been having a tough time dealing with all of the painful memories from last year. Every day reminds us of the events that happened a year ago, the week before Thanksgiving. But this morning we woke up grateful. Tammy and I are grateful to be sleeping next to each other in our own bed. We're excited about going down to Fresno to be with family. Tammy spent a good chunk of yesterday cooking up a storm.
What are we grateful for?
We're grateful for God for helping Natalie get better. She had her 6th checkup and she is still in remission. Dr. Clay, her oncologist, said that 6 months is a big deal and he was happy that we made it.
We're grateful to be together as a family. Yes, the kids fight more than we like, but they fought a bit in the hospital, too. The point is, we are home together.
We're grateful for our family:
Mom and dad, thank you for coming as soon as we needed you and listening when I needed you to.
Troy, thank you for praying.
Ma, thank you for watching Sean and spending nights in the hospital. I know it was hard for you.
Ba, thank you for letting ma help us. We know it is a big sacrifice.
Tracy, thank you for giving us a whole month. You helped us through a tough spot. Sei, Cameron, and Ava, thank you for letting your wife and mom go.
Dinny and Jason, thank you for spending your vacation on us. We needed all the help we could get.
Scott, thank you for coming and for the Cinnabons.
John, thank you for staying with Ma and playing with Sean. We worried constantly about Natalie and frequently about Sean. We didn't want him to be neglected and bounced around from people to people and place to place. Keeping him home with family relieved a great
pressure.
Natalie, thank you for being a trooper. You made the best of a terrible situation and you kept your spirit throughout the whole ordeal.
Sean, thank you for praying every night for Natalie. Thank you for vehemently reassuring your mom that Natalie is going to be all right.
Tammy, thank you for thinking of me even when there were so many other people and things to think about. You made me feel important.

Medical staff:
Dr. Clay, thank you for being sincere, honest, and optimistic.
Robin, thank you for the 2 minutes. If I had to pick my most positive healthcare experience ever, that would be it. We needed to know that someone would give us 2 minutes.
Dr. Matthay, thank you for your sense of humor.
Dr. Bannerjee, thank you for standing firm. We really wanted to go home, but you were right.
Amber, thank you for taking the initiative and cutting Natalie's hair. It hurt, but it needed to be done.
Felix, thank you for the candy.
Tatiana, thank you for the expert blood draws.
Nancy, thank you for always taking your time. You help us feel relaxed.
Dr. Smith, thank you for your youthful vigor and cheer.
Yolanda, thank you for all the elephant journeys, and especially for not being easily hurt. You'll make a great pediatrician.
Christine, thank you for teaching Natalie and Tammy to bead and for telling
us all the good restaurants around UCSF.

Friends:
Weizhu and Patty, thank you for teaching Natalie the recorder.
Zach and Becky, thank you for coming and playing Pokemon sushi with us.
Elbert, Stella, Jonathan, and Elliot, thank you, thank you, thank you for letting us share your house and washing machine and kitchen. A huge piece of home.
Ray, thank you for coming.
Sam, thank you for aggressively listening.
DJ, thank you for helping us coordinate and clean our place.
Geno and Maritza, thank you for talking to us as a couple.
John and Michelle, you understood what it means to be in the hospital. Hospital socks were an extra special touch.
Scott, thank you for talking it out and giving me perspective about our suffering.
Margo, thank you for the CD and study. The CD can still make us cry.
Thank you for everyone who prayed for us, brought us meals, cleaned or decorated our house.
Juan, I still have your Pyrex dish. Thank you for being patient with us!
Gregory Gardens, thank you for the 100 rolls of tape, wonderful letters, and especially the origami crane mobile Natalie has it hanging in her room and we look at it every night.
Miss Danna, thank you for the special trips.
Lisa, thank you for watching out for us at school.
Terry and Art, thank you for the camera!
Mitel, thank you for the DS and games.
Thank you for all of you who donated blood.

There are so many other people we are grateful for and we apologize for not personally thanking everyone. We've thought about way more people than we have entered above, but we need to go to sleep so we can stay healthy.

Update Finally!

2009-12-06T20:40:00.000-08:00

For all our friends and family who may be wondering how we are doing, we apologize for taking so long to post an update since the last one we posted in September. Life just has a way of occupying all of our time and we forget that we have this blog to communicate with all of you.

We are doing well and Natalie's counts looked great on her last monthly UCSF visit in early November. That was the 6 month after treatment visit and her doctor said that it is really a milestone visit since it's been a full 6 months since she was released. She has also been in remission for almost a year. (Grant's note: Natalie's leukemia wasn't showing up after her first round of chemo, which was almost12 months ago. We wanted to go home, but the medical protocol is to complete the entire 5 rounds of chemo. You don't stop when it looks good, you keep hitting it so you're sure you get it all.)

Natalie's visits at UCSF will now be every other month for the next six months. After that, it becomes every 4 months. Yeah!! We took her to a fancy restaurant that night (The Duck Club in Lafayette) to celebrate. Natalie loves going to fancy restaurants because they make her feel special and she gets to dress up almost like a princess.

We also had our big Make-A-Wish trip to Disneyland in early October! We sent the link with pictures of that amazing trip to some of you, but if we miss anybody who would love to see the pictures, please let us know and we'll send the link to you. We had a wonderful time and Natalie's big smile in the pictures really sums up the trip. She had the time of her life. When she was in the makeover chair of the Bibbodi Bobbidi Boutique getting her princes makeover, I (Tammy) started tearing up just thinking about how far Natalie has come from her hospital days. She's so energetic and strong now that I forget that there were a lot of days she spent in the hospital listless and in pain. I have forgotten that she once was so skinny and malnourished that the hospital staff had to weigh her every day to make sure her weight did not drop too dangerously low. When I think of those days, there is a mixture of sadness and joy. The sadness comes because it's still very painful for us to remember our Natalie being so sick. The joy comes from the gratitude we feel for having our family back together again.

Grant's note: My high point of the trip was seeing Sean get picked for the Jedi Training Camp at Disneyland. Sean and I went when Tammy and Natalie were at the BBB (Bibbodi Bobbidi Boutique), but Sean didn't get picked to go up on stage. He sorta lost interest, so we walked out. Our friends told us that kids wearing Star Wars gear or holding up signs usually got called up on stage, so the next day, I went to work. I cut up Sean's Lego X-Wing box and folded it in half. The top still showed the X-Wing and on the bottom I wrote in big bold letters: The FORCE is with me! We got there early and sat in the front. I carefully pulled out the sign and got ready. Meanwhile, Tammy talked to one of the ushers and told them we were on a Make A Wish trip, but the ushers said the lead actor made the choices, so they couldn't promise anything. I held up the sign and prayed. When the lead actor started making his choices, Sean was the very first pick! I was super happy. Sean has suffered, too, and it is easy to forget him, but that was his show. He deserved it!

We almost have a normal life again, but not quite. With the intensive treatment Natalie got, her body is more sensitive than the average child to the environment around her. She's been having bad allergies, which she had around this time last year too. Her pediatrician referred us to a specialist since Natalie's health history is more complicated than a normal pediatric patient. The intersting thing is that the specialist turned out to be the same guy Grant goes to for his allergies. Natalie thought that was pretty funny that she shares the same doctor with her papa.

We also had to take Natalie and Sean out of school for the month of October until Natalie got her H1N1 vaccine. There were a couple of cases of the H1N1 virus at her school. After patiently calling around, we finally got her the vaccine right before Halloween. We were happy about that since she got to go trick-or-treating as Minnie Mouse! (Grant's note: Wow, I owe you pix from there, too.)

Thursday Appointment

2009-09-12T11:34:00.000-07:00

We've been busy transitioning Natalie and Sean to school that we haven't updated the blog as much as we want to.

Natalie had her monthly blood test and UCSF visit this past Thursday. We always hold our breath waiting for the results. Leukemia still feels like a monster, lurking persistently in our mind, looming over our life, threatening to re-enter it without warning. I'm hoping for the day that we no longer feel the proximity of it and it feels like it is so distant like another lifetime.

We were so happy to hear that Natalie's blood looks great. Hemoglobin is at 14, platelets are at 300,000 and ANC 4,000. We hope and pray it continues to stay strong and healthy for many, many, many years.

Thank you all for your continued prayers and support.

Sean is really loving kindergarten. The school had their annual community parade yesterday. He was looking forward to that parade since last week. After so many years of watching is older sister in the parade, he would finally be in the parade. He kept asking me all through the week, "Are you thinking of what I'm thinking?"
"Probably not," I would reply to him. "What are you thinking?"
"The parade is on Friday!"
It was a joy to see him so happy that day.

Natalie is slowly getting used to school. She still has some awkward days where she feels sad that she is so different, but in general she is enjoying being back in school.

Back To School

2009-09-03T18:46:00.001-07:00

It was an emotional week in our house as both kids started their school year. Natalie's first day was a little rough as she did get some comments from her classmates about her hair. She was also very sad that most of her friends are in the other third grade class. She knows a lot of the boys in her class and they all were happy to see her back, but she really wanted to be with her girlfriends. We are working on helping her build new friendships with the other girls in her class. We were afraid that she would not want to go back to school after her first day, but she seems willing to keep going and overcome the different challenges. She inspires us so much with her spirit. We know it's hard for her and I was almost close to pulling her out of school if it was going to stress her too much. She seems to be doing so much better after Monday so I'm glad we hanged in there.

Sean loves kindergarten! On the first day of school, he was as cool as a cucumber. No tears at all. He had this look on his face like, "Okay, you can leave now. I'm all good." I was the one not knowing what to do with myself while both kids were in their classes. Sean comes home every day telling me how much fun he had at school.

Eileen and Gina from UCSF came to Natalie's school today to do their presentation for both of the third grade classes on cancer and how they can help Natalie transition back to school. Natalie was so happy to see both Eileen and Gina that she couldn't stop talking to both classes about her experience at UCSF. We were so grateful for the presentation and hope that they answered all the questions the kids have about Natalie. We hope both classes become like family to Natalie the way the hospital staff became like family to her as they go through her recovery with her this year.

Preparing for School

2009-08-18T10:32:00.000-07:00

Natalie got the green light to go back to school. Acutally, her doctors urged us to put her back in school because she's missed so much of her childhood already. We just have to be cautious with making sure Natalie washes her hands a lot in school and do the best we can to help her not get sick.

We met with her new principal a week ago to discuss the transition. She was really nice and supportive of providing whatever support is needed to help Natalie do well. She has been a principal for many years and Natalie is her first case of working with a child who had cancer. We are going to start with a reduced schedule for Natalie and see if she has the stamina to handle full days. This is a little scary for us all and we are going to need support and help to get through the transition.

If it was up to me, I would have Natalie stay home for another year just to make sure that she was good and ready to be back. By then, her hair will be long again and she would not have to hear the comments she hears all the time from kids now like, "Why did you cut your hair?" Also, she would be stronger physically.

Last night, one of her classmates rode his bike over to our house to see her. He lives one block from us and has seen Natalie ride her scooter in the evenings down his street. A couple of nights ago he tried to get her attention, but she didn't recognize him because she was riding her scooter really fast. It caught us by surprise to see this little blonde boy all by himself on a bicycle that was too big for him, asking, "Is she done with cancer?" Natalie was a little shy and also surprised that he knew where she lived. I told him that Natalie is done with her treatment and going back to school in a couple of weeks. He just smiled, turned his bicycle around, and said, " I have to go tell my mom!"

The truth is Natalie is nervous about how her classmates will react to her going back to school. Eileen (Natalie's child life specialist at the hosptial) has volunteered to come out to her class to explain to the kids where Natalie has been and what cancer is to help with Natalie's transition. This helps the kids to know that what Natalie had is not contagious and why her hair is short. Natalie wants her to come because she wants to see Eileen again. Just the mention of Eileen's name makes her smile. She also does not want to explain a million times to all her friends why her hair is short. She rather have Eileen do that.

Sean will also start kindergarten since Natalie is going back to school. He had his kindergarten assessment last Thursday and did great. The teacher who assessed him said to me afterwards, "He is amazing! He is totally ready for kindergarten and beyond. I can tell that you've worked a lot with him to get him ready." I told her that I really haven't done anything with him. I was even honest in his paperwork that his favorite toy is his DS and he does watch way more television than he should. In fact, he has seen practically every Pokemon movie that is out there. If she only knew where I've spent most of the last year of my life, she would've believed me.

My biggest challenge as a mom is to not hover over my children. I do feel guilty that I work. So every moment I have with them, I do hover. I realize one day last week that one of my job as a mom is to help my kids be independent adults one day. They can't really learn independence if I am constantly there. Natalie's principal even said me in our meeting last week that I need to not hover and let other people share in the joy of raising my children. So, I am going to try my best to not hover.

We'll keep you posted on how things go with going back to school.

On a different note, we do have a special request for all of Natalie's angels. We have a friend of the family who is battling pancreatic cancer. Her name is Terry Wise and she lives in Indiana. She was diagnosed with pancreatic cancer shortly before Natalie was discharged from the hospital. She has her own blog on CarePages named, "Terry's Angels", which was inspired by Natalie's blog. We've been praying for her every day, but would like to lend some of Natalie's angels to pray for her too to win her battle with cancer.

Great Day

2009-08-07T10:48:00.001-07:00

Yesterday was Natalie's monthly visit to UCSF and blood draw. The morning started with waking up to the sound of Sean's little legs running with delight down the hallway to the living room in search of his DS. He was excited about his last battle with Gym Leader Cynthia on Pokemon Platinum because the victory would mean that after months of battle, he would officially be the champion and arrived at the highest level possible with that game. We've been limiting his DS time to only an hour a day so he's been patiently waiting for his last battle. The battle was quick and he emerged victorious! We have never seen anyone so excited for a battle.

We've been battling Natalie's cancer and transition with less enthusiasm. As usual, we woke up with a little anxiety about how the day would go. So Sean's energy and happiness was much needed and an unexpected gift going into the day.

We went first to John Muir for Natalie's blood draw. Nancy, the nurse who normally performs the draw, was away this week at Camp Okizu (Camp for Kids With or Recovered From Cancer). Natalie was a little sad she wasn't there, but was happy to see Dr. Smith. The Draw took less than 30 seconds and Natalie did great.

We then went to UCSF to see Dr. Clay at the clinic. Yolanda came to hang out with us before our visit. She just got back from China and had pictures to show. Natalie was really excited and so happy to see Yolanda. She almost jumped out of the car when she saw Yolanda on the sidewalk when we pulled in. She was happy and talkative throughout her whole appointment.

We also got good news that we can stop her meds which means Natalie can start going out during the day again! She also can be around people again. We just have to be cautious about handwashing and keeping her healthy.

It was great news and a great day for us and Natalie. Thank you for all your prayers!

Results Are Good

2009-07-10T20:01:00.000-07:00

The lab results from Natalie's blood draw yesterday look good. Natalie's blood and bone marrow are doing what they are suppose to do. Her hemoglobin is at 12.5. Platelets and ANC are stable at around the same numbers as last time. We tried not to bombard her poor doctor with too many questions yesterday as we've done in the past, but we did ask again when we could be around crowds. The answer is still the same that it is in Natalie's best interst that she does not get sick, and it's worth it to wait. At this point, if she does get sick, she would have to go into the emergency room and they would treat it really seriously. We definitey don't want that. Also, with the swine flu virus still going strong, it's probably best to play it safe with the kids.

So, we continue to collect creative ideas for the kids to have fun this Summer without exposing them to too many germs or the sun. Tonight, we took an idea that one of our friends gave us, and we are taking the kids out to a drive-in movie. We are going to watch "Ice Age". Both kids are bathed, in their pjs, have their snacks and blankets ready for the 8:50 show.

Tomorrow, we are going to stay a night at Embassy Suites in town so that the kids can swim in the in-door pool and feel somewhat like they are on vacation. At least it is something different for them to look forward to.

We've had good days and bad days dealing with the transition. Sometimes we do feel so overwhelmed thinking about getting Natalie and Sean ready to go back to school. It's hard to shake the fear of her getting sick from being at school with other kids. There have been days that the kids are so bored at home that they start getting on each other's nerves and my nerves. But, when we all remember how hard it was to be apart from each other so many months, we are super grateful for the time together. We wouldn't trade that for anything.

Update on Us

2009-07-08T22:05:00.000-07:00

Sorry it's been so long since our last update. We've been busy as always with the kids.

We have some great pictures of Natalie that we will try to upload to the blog site when and if we get some down time.

This weekend was a pretty fun weekend for us. We were able to have a normal 4th of July despite trying to stay away from crowds. We started the day with going to the Pleasant Hill parade, and found a nice spot in a shaded corner to camp out with our folding chairs to see the parade. It was nice to see some friends there as well. Natalie was so excited to see two friends in the parade.

That evening we went over to hang out with our friends, the Hopkins. They went out of their way to make sure their house was sanitized and both of their kids were well before we came over for a BBQ. Natalie and Sean both got to play with kids their age and it was so relaxing. The great thing is that the Hopkins live just a couple of streets away from the College Park fireworks so we got great seats in their courtyard watching the show. It was actually one of the best shows we've seen. Sean and Natalie both loved it. The funny thing is that Sean did not even know what fireworks was before that night. When we asked him if he wanted to see fireworks, he asked, "What are fireworks?" I guess that neither the 4th of July we had in Lake Tahoe or the Martinez fireworks show we've seen in the past left a lasting impression on him. He was really into this one!

Tomorrow is Natalie's monthly blood draw and appointment at UCSF. I know we should be more relaxed with these appointments by now, but it's hard to not be nervous. We are sending this message out to ask all of you to please pray for the appointment and results to go well. We'll keep you posted on how it goes.

Blood Draw Today

2009-06-22T12:52:00.000-07:00

I took Natalie in this morning for another blood draw at John Muir Hospital to check her hemoglobin since it was on the low end the last draw. There were two security guards blocking the entrance. When they saw Natalie, they told us that kids under 16 were not allowed in the hospital anymore due to the swine flu virus. They did not want any kids bringing any germs into the hospital since they have sick patients inside. Good thing I did not bring Sean with us. It was only after I told them that Natalie had an appointment that they smiled and let us through.

Natalie had a big smile on her face as she was walking down the hallway to Dr. Smith's office. She loves going there to see Nurse Nancy and Dr. Smith just as much as she loves going to UCSF to see all staff there. If there is one bright spot through all this is that the people who work with kids like Natalie are the best. They do make the kids feel so special and loved. Another treasure we've discovered in our dark time is that our friends, family, co-workers and community are incredible people with incredible hearts.

Blood draw went well although it took longer than the 30 seconds that Nancy thought it would take. Results are good. Her hemoglobin is at 10.2, platelets 400,000, and ANC 2,600. Her body is producing blood on its own.

Natalie's weight is at 52.2 as a result of eating so well. Dr. Smith said her dad should give her an increase in her allowance since she is doing such a great job eating and drinking. I guess if she had an allowance, we would increase it. :-)

Thanks to the moms at Gregory Gardens Elementary who have been bringing over dinners to us, we've been eating really well. Thanks for all the yummy dinners everybody!

Natalie and Sean have been riding their bikes and scooters almost every day. We've been driving to the empty parking lot of the school and letting the kids ride around. We open the back of our highlander and have been having our own tailgate parties as the kids play. They love exploring there. The other day they searched for different color leaves and also saw a spider eating dinner (an ant that the spider had caught). Natalie found that fascinating.

Our next doctor's appointment is July 7th at UCSF. We'll try to update more on the blog. It's just been so busy for us trying to take care of the kids and trying to catch up at work.

My Eater Is Back

2009-06-15T16:55:00.000-07:00

Natalie is doing really well. Her appetite seems to be back to normal. She is eating full meals and even wants a snack between meals and dessert. This is the Natalie we've known since birth and love; she has always loved food and all kinds of it. That is why it was so painful to see her barely eat a bite of anything in the hospital.

Natalie's energy level has also grown. She has been running up and down the stairs at home, riding her scooter outside, and doing art.

We hope her hemoglobin is way up from last Monday. We suspect it is from the way Natalie is acting, but will not get a formal confirmation until her blood draw next week.

The biopsy from last Tuesday is also good. It was a long day on Tuesday for us, but we were happy to hear that she does not need another biopsy done unless something looks suspicious in her blood. Natalie will go in for monthly blood draws for a couple of months, then it will change to once every other month, then once every 4 months, then once every six months. After 5 years, she will be considered cured and will only have to go in annually for a check up.

We've been really busy trying to transition. I didn't know how hard it was until we lost the support of the hospital staff. It took Natalie a while to finally get the hang of taking medicine orally again. Then, there is the boredom issue. Natalie is still recovering at home so she can't really go out and be around other kids. As a result, she is going stir crazy at home. She looks out the window and wants to be part of the real world again. She wants to have sleepovers, playdates, swim, and go inside a store full of people. When she realizes she can't yet, she gets sad and mad. She is learning to be patient and I am learning that lesson as well.

We've been going back and forth on the decision to rent out our condo and rent a house with a yard so that the kids can have a yard to play while Natalie is recovering this summer. I just feel so bad that both Sean and Natalie are cooped up inside all day because Natalie can't be around people. It takes so much effort to search for a place, find somebody to rent our place, and move. We are just praying that the right place opens up for us if we are meant to move.

Grant and I are both trying to take better care of ourselves as well. We've both have gained a little weight from sitting day after day in a hospital room. We've been doing WiiFit at home when we can. I also enrolled in Yogaworks in Walnut Creek through my job. That place is amazing. It looks, feels, and smells like a spa that I just want to spend the whole day there doing yoga and read a good book by the bay window in between yoga classes. Of course, that will never happen with my busy schedule.

That was crazy wishful thinking until I actually took a yoga class last Friday with my co-worker. That was when I realized how hard yoga really is and how out of shape I am. My co-worker, who runs and is in great shape, thought that it would be relaxing and fun. She didn't really think we were going to even break a sweat. My view of yoga is that is suppose to be a class to meditate and relax as well. We were both wrong. Sweat was pouring out of both of us during the middle of class. We both realize it's going to be a challenge, but it will be a great workout as well when we get better at it.

Natalie was playing on Webkinz today and she was happy that she knew all the answers to the medical trivia on there like:
1. Which cell is bigger? A white blood cell or red blood cell?
2. What is the function of the red blood cells?

It's good to know that she got some education during her hospital stay!

Monday Update

2009-06-08T13:29:00.001-07:00

We had a fun weekend with the kids. Sean got a new bike so we've been taking him out to ride it every day. We took Natalie to a gigantic art supply store in San Francisco. It was a dream trip for her and she had a lot of fun looking through all the stuff on all 3 floors. We were very careful to keep her away from people. Thank goodness the store was not crowded so it was easy to do that.

Natalie's platelets are going up. They were at 39,000 last Wednesday and they are at 133,000 from today's blood draw. Her ANC is also up from 1,240 to 2,400. We are so happy to see her marrow recovering. The only thing that is trailing is her hemoglobin. They are stable, but not going up. We need prayers for her body to start making some more hemoglobin.

Natalie is doing so much better with the blood draws. She has grown so much from the first time she got poked with a needle. She still says she is scared, but she is less anxious and takes the pokes really well. It also helps that the nurse who does the draw is really good.

Her doctor today said it will probably take 3 months for her body to fully recover. I guess that will be what Natalie will be doing this summer-recovering. We need to figure out how to make it fun for Natalie. We don't want her to be exposed to too much germs, but at same time want her to have some fun.

Grant and I are taking Natalie to UCSF tomorrow for a bone marrow biopsy. That is done every time Natalie finishes a round of chemo. Please pray for that to go well.

In Transition

2009-06-02T12:18:00.000-07:00

We've been busy trying to be nurse Natalie back to full recovery. We are so happy that she is home, but the reality is that her body has not fully recovered from the last round. They let us go home because her ANC counts jumped so high, but we are still waiting and praying for her bone marrow to produce again, specifically some platelets. We are also trying to put some weight on Natalie.

It is so hard for me to see her so scrawny. One of the doctors said to me that he is certain that she is malnourished because of all the problems we had with the feeding tube and her tummy this last round. We've been cooking anything that she requests even if she only takes a few bites and pushes the rest away. She eats like a bird and nibbles throughout the day- pieces of string cheese, fruit, bacon, etc.

She's been asking to go shopping almost every day, but we are going to wait until her body has fully recovered before we expose her to any germs out there.

Natalie had to get a blood draw yesterday to monitor her platelets. We waited until Sunday night to drop the news that she will have to get poked because she no longer has a pick line. Surprisingly, she took it well. She also did really well with the poke. The nurse only had to do one poke and did not bruise her at all. She kept the IV in so that she does not have to get poked again tomorrow when they will do another blood draw to get an update on her platelets.

Please pray that her body starts producing platelets again. Her ANC looks good, but we are hoping that she does not need any more platelet transfusions.

Natalie will also need to have a bone marrow biopsy done next Tuesday so they can see how her marrow is doing after 5 rounds of chemo. Please pray for that to go well too.

We're Really Home For Good!

2009-05-29T19:06:00.000-07:00

What a day! We were told yesterday that Friday is out for going home since counts dropped and then this morning everything changed again. It's the story of our life- unpredictable, surprises at every corner, and emotional. Got up at 9:00 am and the first question on my mind was what Natalie's ANC is. The nurse smiles and says, "It's at 1,240."

"Are you serious?" I leap out of bed so surprised at the huge jump in numbers.
"Does that mean we can go home?"

Natalie is still asleep and upset that we are stirring her from her sweet slumber. She doesn't want to go home and doesn't want to talk about it because of the huge ordeal with taking a big, stinky pill last night. Since they are trying to transition Natalie from IV antibiotics to oral, she had to begin taking her antibiotic by mouth last night. What a fight that was. She had the biggest fit ever because the pill smells like poo poo to her. She doesn't want to go home if it means taking the poo poo pill by mouth. She finally choked it down after much tears last night.

The doctors confirm what I want to hear this morning- We can go home! They don't know how Natalie made her counts jump so high, but counts are so high that they feel good with discharging her. The bad news is that on top of taking the antibiotic orally, they want to take the pick line out before she goes home.

My emotions are all over the map. I'm too tired to battle with Natalie over the pill and I definitely do not want to even let her know about the pick line removal. I call Grant to pass on the good news and ask him to come immediately for support because Natalie is having a big fit about going home because of the pill. They wanted her to take the pill again this morning. I spot Eileen, Natalie's child life specialist by the door. I've never been so happy to see Eileen. She's trained to talk to kids when they are anxious about procedures and she has a great relationship with Natalie. I send her to Natalie's room as I email everybody the confirmation that we are going home.

When I get back to Natalie's room, she is happy as a clam. She's laughing and talking with Eileen. Eileen has worked her magic. She understands that Natalie is overwhelmed and she is so patient with her.

Good news-they can change the pill to liquid form and just push it through a syringe through Natalie's NG tube. She can keep the tube in until June 9. Only 3 more days of the stinky antibiotic and Natalie does not have to deal with swallowing it after all.

The next battle is letting know her pick line needs to come out. Of course, she is not happy. The nurses and doctors are extremely patient with her and wait the entire 2 1/2 hours for Natalie to remove the tape dressing from her pick line. It took 2 minutes to remove the line after Natalie took 2 1/2 hours to remove the dressing herself.

At 3 pm, we are ready to go. There's a gathering, banner, clapping, and some tears. Natalie and I can't cry. We are so overwhelmed and shocked. We can't believe this is really happening. My body is in some state of emotional shock. Why can't I cry? I normally cry so easily at anything. Is it because I've cried almost every day for the last 6 months that the well broke? The nurses are crying and Grant is crying. I'm just so happy to go home, but I can't cry. I am worried that something is wrong with me.

We get home and Natale is so happy to see the beautiful banner and balloons for her in front of our house. She is happy to see more beautiful decorations in our house and her room. It's perfect and exactly what we wanted.

We eat, and the kids watch a movie. I fall asleep for 2 hours. When I wake up, my emotions kick in. I am crying now as I type this. What a relief to know that the well is working again.

We are so happy to be home and done with Natalie's treatment. I am so happy to see Natalie and Sean playing together again. We are so happy to have wonderful friend and family. We love you all.

We'll continue to keep this blog up until Natalie's considered cured in five years. Thank you all who have supported us on our scary journey. We move on to transitioning Natalie back to normal life and clinic visits. We hope bigger and better things are in store for us around the corner.

Just a Couple More Days

2009-05-28T21:59:00.000-07:00

Natalie's counts dropped a little today to 470, so they want to keep her here to make sure it stabilizes before discharging her. This is typical for Natalie- her trend is to go up and down. They said MAYBE Saturday before we can go home. Nothing is predictable with the counts. All we know is that we have learned to go with the flow of things and that it is impossible to plan anything in this situation. It's still good news for us if we go home in a couple of days. We're just so happy that Natalie is doing better.

We don't really want anything big for Natalie when she does go home. We're thinking balloons, a banner, and a cake with our immediate family just to celebrate this milestone. We'll plan a big celebration for her down the road when she is ready to handle the crowd and has a hearty appetite to eat. All of you who have shared this journey with us will definitely be invited.

So Happy Can't Sleep

2009-05-28T01:40:00.001-07:00

Natalie's counts jumped up to 530 today! We are so happy and amazed. Sorry that I wasn't able to share the good news with all of you earlier. The internet connection in our hospital room is really bad so I was only able to quickly send out an email to a list of people that are in my blackberry.

The doctors said we should plan to go home this Friday. Yes, in two days. Can you believe it? I am beyond happy just thinking about all the things Natalie can do again and having our family back together under one roof after months of enduring through so much.

We were just in ICU last week, and then the pneumonia ordeal. We were told to expect to stay at the hospital for a couple of weeks after getting out of ICU. I am still in shock that we may be able to go home on Friday.

I never got to share with all of you how scary it was when Natalie went down to ICU. It was the scariest experience in my entire life as the ICU doctors were pacing anxiously back and forth staring intensely at the numbers on her vitals tracking monitor, and then making a quick decision to operate and take out her broviac line. I never felt so helpless or experienced so much distress as I waited outside the room during the procedure. Then, after the procedure, being told that the next 12 hours are critical for Natalie. "She could get better or get way worse," was what we were told after the broviac line came out. She couldn't eat anything for two days because they wanted to be able to intervene if her condition got worse. It was nerve wrecking as her numbers did not jump as high as they wanted them to the following day and thinking that any moment something scarier could happen.

So going from the depths of despair to incredible news is so surreal to us right now. We will probably cry on Friday. They will be different tears from the tears that were shed when Natalie was in ICU, but we will probably be a teary mess just the same.

Counts Are Up

2009-05-26T21:10:00.000-07:00

Guess what? Natalie's counts jumped up to 80 this weekend and then up to 160 today! They said that if she continues going up, it is possible that she may be able to go home next week. As Sean would say, "forever and ever." The thought of being completely done with this is so unbelievable to us. I am sure we will cry as much as we will celebrate with all of you.

Of course, Natalie's trend is that she has a tendency to go down a little and then bounce up again for a bit. We are hoping it doesn't go down too much and bounces up really high.

Standing Up and Holding On

2009-05-24T12:08:00.000-07:00

This has probably been one of the toughest weeks for us. We're relying on so many for help to get us through. Never thought we would also be relying on Beyonce and Avril Lavigne to help get us through too. I'm talking about their music of course. A couple of months ago, my friend Margo gave me a cd she put together of songs to help in the crazy journey we are on. On the cd is "Just Stand Up" and "Keep Holding On". Both great songs that are fitting for our circumstances. Natalie loves the cd too.

I just listened to the songs this morning again and they made me cry. Thankfully, nobody came in.

I am reminded that we can get through this and we are stronger than we think.

The good news is that Natalie has not had a fever since Friday night. She has also been pretty active. She wanted Sean and her Po Po to visit yesterday and she also wanted to take a shower. Both good signs that she is feeling better. They took her off one of the antibiotics today and said if she continues to do better, they will start taking more off. She is on so many right now. They are what the medical team refer to as "the big guns".

The challenging thing is that her nose feeding tube got clogged yesterday. They tried squirting cola into it as well as put the guide wire through it to unclog it. No luck. One of the doctors want it out today for fear it may cause an infection. Grant just called to say hold off because he has an idea how to unclog it. We'll see... The nurses said that as long as she eats, she doesn't need it. Natalie ate half a hotdog and some cheese crackers yesterday. She asked for a Costco hotdog and smoothie today. Robin, the only nurse that Natalie will let put a nose tube down her, is not here today unfortunately. It's her daughter's birthday.

Also, with all the events of this week, everyone forgot that the gauze that is on the site of where they removed her broviac should've been removed days ago. The rule here is that a bandage can't stay on longer than 24 hours because of possible bacteria infection. So,last night it took us almost over 1 1/2 hours to get Natalie to remove the gauze so the doctors could take a look at the site. She was crying and wanted her papa. We finally got it off. Actually, Natalie got if off because she wouldn't let anyone do it. The site looks really good. Jenny, the nurse, was going to put a sad face band-aid on it. Natalie stopped her and said, "I want a happy face band-aid." She's such a funny girl. I'm glad she wants her papa though because he is spending the night tonight and she will have to remove the happy face band-aid tonight to let it air again. She has to do this every night until the site completely heals.

We need everybody to please pray for Natalie's counts to start going way up! We've been told that once her counts come, she will be less prone to getting another infection and be able to recover from her pneumonia easier too. The good thing is that her strep seems to be gone. The pneumonia is also really small and in one lobe of her lungs only right now. They think it's the same bacteria that was in her blood that caused the pneumonia.

That's it for now. Here are some of the lyrics for the two songs I mentioned ealier.

"Just Stand Up"- Beyonce
"Everything'll be alright again
alright again, alright again

The heart is stronger than you think
LIke it could go through anything
And even when you think it can't
It finds a way to still push on through

Sometimes you wanna run away
Ain't got the patience for the pain
And if you don't believe it look into your heart
The beat goes on

I'm telling you things get better through whatever
If you fall, dust if off, don't let up
Don't you know you can be your own miracle
You need to know

If the mind keeps thinking you've had enough
But the heart keeps telling you don't give up
Who are we to be questioning, wondering what is what
Don't give up, through it all, just stand up.

It's like we all had better days
Problems getting all up in your face
Just because you go through it
Don't mean it gotta take control, no

If the mind keeps thinking you've had enough
But the heart keeps telling you don't give up
Who are we to be questioning, wondering what is what
Don't give up, through it all, just stand up.

"Keep Holding On"-Avril Lavigne

You're not alone, together we stand
I'll be by your side, you know I'll take your hand
When it gets cold and it feels like the end
There's no place to go, you know I won't give in

No I won't give in
Keep holding on
'Cause you know we'll make it through, we'll make it through
Just stay strong
'Cause you know I'm here for you, I'm here for you

Doctor Just Came In

2009-05-22T01:14:00.000-07:00

and the results of her scan shows Natalie has pneumonia. Please pray hard for Natalie again and for us that we can overcome this. We are so tired.

Roller Coaster

2009-05-21T22:19:00.001-07:00

We seem to be on a roller coaster these days with Natalie's health. We experienced a scary plunge on Sunday when she had to go down to ICU, then rose up to a beautiful height Tuesday when we got out of ICU. We've had dips the past few days. She still has a fever that she can't seem to shake. She'll be okay during the entire day, and then get a fever at night. They did a CAT scan on her today and the doctors are looking over the results this very moment as I am typing this. We are hoping that there is nothing serious going on with Natalie and that she can get over these dips and her stomach problems.

Natalie said to me today, "Just a couple more weeks and we'll be done with this mommy."

She has the sweetest voice that melts my heart.

I want to be done with this today. I want to see Natalie laugh, play, and create art. I want to see her run with her little brother and her friends. I want to see her run into our room like she's done almost every morning for years, and jump into our bed. I want to cook with her. I want to go to the Hello Kitty store with her and watch her rummage through every item in that store trying to figure out how to best spend the $5.00 she just got from the tooth fairy.

Natalie has been sleeping a lot the past two days. She gets up for a couple of hours though to laugh, talk, and play. Yesterday, she painted some butterflies from the stained art book that Art and Terry Wise gave her. Today, she played bingo. We also did the "Decoding the Color Mystery" science experiment from the science kit that Grant gave her. She is not listless. She is just trying to get through her tummy pain by sleeping.

We are hanging in there as best we can and hoping that we can come up from this dip soon.

We're Out of ICU!

2009-05-20T11:09:00.000-07:00

They let us out of ICU last night so we are back on the 7th Floor. We're so happy! Natalie's blood pressure is looking good. Natalie and I both slept through the night last night. We were so tired. We had an incredible nurse last night. Her name is My. She is one of Natalie's favorite nurses and she got to all the beeps on the machines before they woke us up. She's pretty incredible because I didn't hear one beep at all last night.

Natalie is pretty tired and overwhelmed from the whole ICU experience. Her stomach is bothering her still so we are hoping that the antacid they give her will resolve that today.

Hoping To Get Out of ICU Today

2009-05-19T11:02:00.001-07:00

We have a very nice nurse today in ICU. She is very positive and hopeful that Natalie may be able to get out of ICU today. She is the nicest nurse we've had since Natalie has been down here.

The ICU and the team here is so different from 7Long. They are trained to respond immediately to emergency situations so they don't tolerate any negotiations with Natalie. On Sunday, when Natalie asked if she could wait a little on the IV poke, the ICU doctor said to the nurses on 7Long "You let her negotiate?" One of the nurses said, "Yes, because it helps her feel better." They know Natalie so well up there on 7Long. They know that she doesn't like the procedures and pain that comes with her treatment, but she will ultimately cooperate if you give her a little control. Some things are not up for discussion, but the things that she can control (when she wants to take her medicine, who does she want to do the procedure, who she wants to be her nurse for the day, etc.) they let her decide. When Natalie had to come down to ICU, most of the nurses were heartbroken and felt as distressed as we did. It's great how they have become so much a part of our family through the past months and how much they love Natalie.

In ICU today, they took Natalie off of docamine (the medicine they were using to help get her blood pressure up)in hopes to see her body manage to maintain a good blood pressure on its own. They want to see her blood pressure above 85/50. They also started giving her some nutrition through her nose tube today after two days of not letting her eat anything. They gave her some blood as well and have scheduled a dentist to come out to check the cavity she has to make sure that is not another source of infection besides the strep that has been confirmed.

We appreciate all of you who have been praying for Natalie and those who have stayed up the past few nights praying for Natalie. Please continue to pray that she recovers from this infection and that we can leave ICU.

Infection and ICU

2009-05-18T19:43:00.000-07:00

We had one of the most scariest days yesterday since Natalie's treatment. Natalie got a strep infection and had to be moved to the Intensive Care Unit Sunday night because her blood pressure was low all day. They said her body was in shock because of the overwhelming infection and her low counts. They removed her broviac line last night after not being able to get her blood pressure to go up in ICU. They suspect that might be the source of infection and wanted it out immediately. They also inserted a pick line in her for medicine. It was a hard night for us until all the procedures were done. Natalie was so brave through it all though. The night was good for her as her blood pressure seemed stabilized. Of course, she had so many people praying for her that night as well. She was doing so well that they thought she might be able to get out of ICU.

However, this morning, her blood pressure dropped again and they haven't been able to stablize it all day. We are concerned and need as many prayers as we can to get Natalie and us through this. Please pray for us and for Natalie to recover by tomorrow morning so she can go back to 7Long.

Fever

2009-05-17T12:04:00.001-07:00

Natalie woke up with a fever of 103 this morning. We've been here before, but it still does not make it any easier. Please pray that it is not a serious infection and that the antibiotics they started on her will get whatever she has.

Tummy Trouble

2009-05-13T20:21:00.000-07:00

Natalie's counts are low and she is having a hard time tolerating the liquid boost that they normally feed her with. She has vomited at least 3 times in the last two days from the nutritional boost. All three times, her nose/feeding tube came up, but Natalie managed to put it back down her tummy all by herself. The nurses and doctors were really impressed with that. I am not sure how she did today. When I called the hospital, Natalie was asleep and I didn't want to wake her up with too much talking. Grant's parents are with her tonight. They have spent the night with her practically every other night since they've been here. Natalie is sad on the nights they are not with her because she loves doing art and playing with them. They leave on Monday so we are tryig to let her spend as much time as she can with them. We are also trying to get some rest, although both our jobs have been pretty busy.

Just want to put it out there for prayers for Natalie's tummy to be able to tolerate the feeds, or that she regains her appetite so she doesn't have to deal with the feeds. She's been able to take the boost the last 4 rounds, but her body has also been hit so hard with chemo that everything seems harder this round.

Done With Chemo

2009-05-07T21:37:00.001-07:00

We went back to the hospital on Tuesday to continue Natalie's last round of chemo treatment. Today was her last chemo infusion.

Now, we go through a couple of weeks where it gets scary as her counts hit zero again. This is really the part we hate- the blood transfusions, no immunity, and low energy. Natalie's marrow is really tired from all the chemo hits so we've been told that she is not going to bounce back as quickly as her first few rounds.

We are asking for specific prayers for her body to recover quickly and for her little body to be protected from illnesses and infections. Please also pray for us to not get sick either.

Everyone here is trying to help Natalie get through her last round in good spirits. One of the nurses brought in an Easy Bake Oven so Natalie can bake while she is recovering. Another nurse is trying to think of a new craft project for Natalie to do that will keep her entertained. We are all basically trying to think of new things for Natalie to do since she's done practically every arts and crafts project possible.

We are also trying to limit visitors though for this last round because of all the different sicknesses that are out there right now- swine flu, strep, etc. If people would like to write and send her letters/cards, we feel great about that. It would be great for Natalie to finish off her last round of chemo with lots of love. You can send letters directly to the hospital. We are in Room L731.

Love,
The Nakatanis

Rest

2009-05-01T10:19:00.001-07:00

We are home for a couple of days to rest before we continue two more days of chemo. It's been a crazy couple of days for us since Tuesday. Natalie started chemo at 11pm on Tuesday and ended 11 am on Thursday. She didn't eat or drink anything for two days once the medicine started. It was a little scary to see her go from energetic and bubbly to being lethargic. She just wanted to sleep all the time and didn't really want to talk.

She got her shot at 5 pm last night and did really well with it. We definitely have to give a star to Nurse Jane who gave her the shot. She was so quick and good. She was so fast that Natalie did't even have a chance to feel the shot and cry. We numbed her thigh area right before with some ice.

We got home at 7:30 pm and Natalie started having an appetite again at 8:30 pm. It's strange how a change in environment turns her around. She wanted waffles with pure maple syrup for dinner and a glass of milk. Sean and her watched a Pokemon movie together. He was making her smile and laugh by acting out the various scenes in the movie. Nobody lifts up her spirits as much as Sean does. He is good medicine for her and for us. He is pure joy and sunshine.

Natalie woke up happy this morning. She ate a bowl of Honey Nut Cheerios with milk. We are hoping that she continues to eat and get some good rest before we go back to the hospital on Tuesday to repeat what we just did this past week.

Back to the Hospital Tomorrow

2009-04-27T12:08:00.000-07:00

We've had quite an adventurous weekend. We went to the hospital yesterday for a blood draw and dressing change. Then we went to Japantown afterwards to grab some good food and had a picnic in the car. After that, Natalie really wanted to drive across the Golden Gate Bridge home so we did that.

Natalie's ANC is a little over 1300 so we are planning to go back to the hospital tomorrow to start her last round of chemo. Please pray for the biopsy as well as her last chemo treatment to go really well.

As part of her last round of treatment, Natalie needs to get two shots. We finally sat down with her and told her about them because we didn't want her to stress out over it for weeks. Of course, she asked us lots of questions about it--how big is the needle? Is it like getting a flu shot? Does she have a choice where they give the shot? Can she pick the nurse to give the shots to her? We didn't have answers to most of her questions, but she was okay with that. I am sure she will ask the doctors when she is at the hospital tomorrow. She handled it better than we expected. She has grown so much from when she was first admitted to the hospital. I think also because we are getting her a little treat that makes getting the shots more bearable for her.

750

2009-04-22T14:57:00.000-07:00

is the number from the blood draw today. Not enough for Natalie to start chemo tomorrow. It's going the right direction, but slowly. We are happy to have more time together. It's looking like next Tuesday that Natalie starts her last round of chemo. Natalie is a little sad because she was looking forward to seeing her friends from the hospital tomorrow. We were also all hoping to be done with treatment by Grant's birthday, May 16. That's probably not likely now. In the big scheme of things, we are happy to be together and to see Natalie with energy.

640

2009-04-21T12:24:00.000-07:00

We went to UCSF Hospital on Sunday to change the dressing on Natalie's central line. The nurse also drew some blood to see where Natalie's counts are at. As of Sunday her ANC is 640 so we are waiting to do another blood draw Wednesday to see if she will make it to 1,000 to start her last round of chemo this Thursday. If her counts are below 1,000, they will shoot for next Tuesday to start.

This is the longest time that we've been home as a family since Natalie was diagnosed. It's been really nice. We've been spending great time together as a family and the kids have been really happy.

We've noticed that Natalie's bone marrow is taking longer to recover than the previous rounds of chemo. We've been told it's because her bone marrow is really tired from all the chemo, but will eventually recover.

Natalie's appetite is stable. She got sick of fettuccine after eating it day and night for 3 days. She moved on to eating the ham and cheese kid's sandwich at Quiznos for 3 days. Now, she wants waffles and pure maple syrup only. It's strange how she clings on to one thing and eats it until she gets sick of it. She's drinking like a fish again so we are happy about that.

We'll keep you posted on if she starts chemo this week. As always, please pray that she does amazingly well with this round of chemo

Fettuccine

2009-04-15T13:13:00.000-07:00

Natalie's appetite has improved since Sunday. Fettuccine seems to be the new dish she loves to eat for breakfast, lunch, and dinner. It's high in calories so that's good. She needs the calories. I try to make a fresh batch for her every day. Natalie helps with sprinkling the parmesan cheese in. We also baked a yellow cake from scratch on Monday night. She's been nibbling on that with some milk.

Our Easter

2009-04-15T13:08:00.000-07:00

Easter was good. Saturday, Tammy and the kids baked sugar cookies. Then Tammy and I stayed up until about 11pm putting together Easter baskets for them. Tammy and I were going to go to church Sunday, but Natalie has not been her normal self when she is at home. She does not have the appetite she has when her counts are high. Both Tammy and Natalie were worried about leaving Natalie home with just Tammy’s mom not knowing where her counts were at. When we left the hospital, her ANC was 410, but it has a tendency to go up and down. We decided to stay near the kids.

Easter morning, the kids ran downstairs and found their baskets, then ran back upstairs to ask if they could eat candy before breakfast. No, gotta wait. Tammy’s mom made breakfast, then we puttered around before we went to UCSF. Natalie needed her dressing changed on Sunday. When we called the hospital to let them know we were coming in, they said they wanted to draw some blood to see where her counts were at as well as do the dressing change. Natalie and Sean decorated the cookies and we brought them for the nurses. We got into UCSF about 2pm and stayed a couple hours, chatting merrily with Robin as she changed Natalie's dressing. Robin also brought Natalie a slice of ham and another nurse gave her a chocolate cupcake, which Natalie slipped to me. Robin mentioned that she made scalloped potatoes, but they were gone, so we didn't get any. When Robin was out, Natalie said she didn't want them anyway, but after I explained that they were cheesy potatoes, she changed her tune! Natalie wanted to stay at the hospital longer, then we reminded her that we still had the Easter egg hunt at home.

We picked up some Yummy Yummy special fried rice, then Natalie wanted to see the You See Sushi storefront, so we drove back that way. Finally got home about 5pm, then Tammy jumped right into cooking scalloped potatoes. Tammy’s mom made 5 spice chicken, using organic chickens. While the potatoes were browning, we had our Easter egg hunt. Natalie didn't want Sean to get a head start, so we hid a dozen eggs for Natalie in her room and a dozen in Sean's room. We cut them loose and they had a grand time.

Ate dinner, did dishes, gave Sean and Natalie a bath, then put a movie on for the kiddies. What a day! We are so glad that we got to be home together for Easter.

We also found out that night that Natalie’s counts had dropped to 270. Her counts are still low so it’s looking more like we go back to the hospital next Tuesday for her last round of chemo. We are praying that her counts go up. We are enjoying our extended time home as a family.

We're Home!

2009-04-10T17:02:00.000-07:00

Sorry for not updating yesterday. We found out that very morning that Natalie could go home so it was a whirlwind for us to pack all her stuff and get her situated at home. Boy, does she have a lot of stuff!

We've been enjoying our family time together at home. Sean was leaping with joy when he saw Natalie at the door. Natalie LOVES her new bed and the elephant quilt that Mary made for her. She spent most of the day in her new bed playing with Sean and their stuffed animals.

We decided to dye Easter eggs last night. That was really fun for both Natalie and Sean. Natalie had forgotten how fun it is to dye eggs. We think it was because last year we didn't stick with the tradition because we were in Niagara Falls for Easter. The year before we were in Seattle so it's been a long time. Of course, Sean was really rough with his boiled eggs since it was his first time. It was a miracle he didn't crack any.

Today, Easter packages came in the mail for the kids from their grandparents and Uncle Herb and Auntie Linda. They are both happily eating and playing with their Easter treats right now. We are doing well. We're praying for no fevers so Natalie can stay home until next Tuesday!

Counts Are Up

2009-04-07T15:03:00.000-07:00

Natalie's ANC is at 270 today. Please pray it goes way up tomorrow so we can be home together for Easter!

Specific Prayer Request

2009-04-03T22:03:00.001-07:00

I forgot to ask in my previous post for all of you to pray that Natalie's bone marrow recovers this coming week. Her ANC needs to be at 500 for us to go home. We would love to be home for Easter. Thank you.

It's Been Quite A Week

2009-04-03T13:58:00.000-07:00

(by Tammy)

We've had quite a week, but we are still standing with help from our friends and family. Natalie's counts have been crawling up and dipping and crawling up again. Today she is at 110. Platelets are still low so it's a sign to me that her bone marrow has not recovered from the last chemo hit.

This is what our week has been like:
Sunday- We got the news that Grant's Grandma passed away peacefully in her sleep the night before. The news put us in a little depression the next couple of days because we were so hoping to get to go down there all together to see her this summer.

Tuesday morning- I was feeling pretty warm and checked my temperature. Sure enough, I had a fever. I didn't have any other symptoms like a cough, sore throat, or runny nose. I just felt worn down and hot. Poor Sean had to stay home and take care of me that day because he had already been exposed to whatever I possibly had. He was such a sweet boy though. He brought up a bottle of water for me without me asking him to and said, "Mama, I think you should drink some water." Then he went downstairs to play on the computer, got himself some Kix cereal to eat, played on his DS, checked on me, played Monopoly with his stuffed animals, watched some tv, checked on me again, and read some of his books. He is a truly an amazing 4 year old. He is not only a little genius in the making ( he can read and do math, which he taught himself while we've been occupied with Natalie at the hospital), he has such a great heart. At some point, I did make hotdogs and broccoli for lunch for us. I think we had canned chicken noodle soup for dinner. It was my night at the hospital, but I had to call Grant to tell him that I couldn't go because I was sick. I felt horrible because he had such a busy schedule lined up for work on Wed, and I felt worse when Natalie was really sad that I wasn't coming. I threw a pity party for myself that night, complete with tears and could almost hear the sad violin music playing in the background. Yes, it was pretty pathetic. Once I realized it, I made myself snap out of it and send an SOS out to some friends for help-those Natalie would feel okay with spending some nights at the hospital in case the fever lingered.

Wednesday- No fever, but decided to stay away from Natalie for 24 hours just in case. Stayed in bed most of the day, and Sean wanted to be near me. I decided to change and wash all my sheets and duvet cover that I've been sleeping in the past few days and ended up washing my work Blackberry with it. This is what happens when an exhausted mom tries to do laundry. My mom came to the rescue and stayed at the hospital that night so Grant could get some rest. My poor husband had to help me try to revive my BB once I realized what I had done. I didn't think it was even any possibility of a revival after 30 minutes of wash, rinse, and spin. Grant somehow knows this fact- if you soak a wet electronic device in rice, it absorbs all the moisture. How does he know this stuff? He was confident that my BB had 50 percent chance of working again as he quickly takes the chip and battery out, and puts the BB in rice. Apparently, the chip and battery can survive anything.

Thursday- I had to tell my boss what I had done and tell him that I will pay for a cost of a new BB if the damaged one does not make it. He tells me, "Don't be ridiculous! It's a work expense and stuff like this happens. I need you to have a reliable device since you are working almost entirely remotely these days. Get a new BB. Trust me, I get the better end of this deal." He is a wonderful boss. He has a wonderful wife too who is making an elephant quilt and pillowcase for Natalie. This turned out to be a great day. I had friends showing up at my doorstep willing to help me with cleaning my house, loading me up with immune boosters, care packages, and refreshed my soul with their friendship. As humbling as it was to ask for help, it is so encouraging when it comes.

We are still mourning the loss of Grandma, but Grant is keeping her legacy alive by teaching Natalie blackjack and telling her about all the great things Grandma did. Blackjack is a game that Grandma had taught Grant.

Natalie and blackjack

2009-04-01T15:03:00.000-07:00

-grant
Natalie has been clearing about $10/day for 3 days in our blackjack lessons. Today I took my lunch break and played with her again. We played with 3 of her elephants. I also taught her how I can:
stack the deck (whoa, I got 4 blackjacks in a row!) and
deal from the bottom of the deck (4 blackjacks again?).

I'm not teaching her to cheat, I'm teaching her how to catch a cheater. I explained that to her. As I think about it, I also showed her how to keep her cards hidden.

There is some math involved, because I make her count her winnings and she has to add up the cards. I explained the concept of counting cards, but that and odds are pretty fuzzy to her. For chips, we're using these little paper stars she folded. They are different colors, with denominations she made up (nickel, dime, 15 cents, 24 cents, and quarter).

On our last hand, she was the dealer. I bet $1 and got two sevens. I split the 7s. The first 7 stood, the 2nd 7 drew another 7, so I split again. She ended up busting, so I cleared $3. She still had over $11 left in her pile. She's happy, I'm happy, now I get to go back to work and she hopped on her DS.

In other news, her counts dropped from 80 yesterday to 60 today. We have more blackjack ahead. . .

Are her counts 400?

2009-03-26T13:53:00.000-07:00

-g
10:49AM Natalie and I were talking about her counts. We hadn't heard what they were today. I was hesitant, because I had prayed that her counts were going to be 50 yesterday, 250 today, and 500 Friday. Her counts were 10 on Monday and 30 on Tuesday, so I figured they could reach 50 by Wednesday. If they kept climbing, we could go home Friday or Saturday! That didn't happen. Her counts dropped to 10 yesterday, so I was pretty bummed.

When I asked her today what she thought her counts were, she said 100. I was afraid and I told Natalie, "I'm afraid to believe, because I don't want to be disappointed again."

Natalie's simple response: "I'm not afraid to believe. God can do anything." Out of the mouths of babes. . .

Tracy, the nurse walked in seconds later. Natalie burst out and asked what her counts were. 400. I was still afraid to believe. I said slowly, skeptically, "They must be 40." I felt terrible, because I was such a wet blanket. Tracy left and checked again. Natalie told me I'd better start packing. I got the suitcase out guiltily. When Tracy returned, she said that Natalie's counts were 10 yesterday and 400 today. Whoa. I almost started crying. I told Tracy about my prayer yesterday.

We called Tammy and told her the good news, both about Natalie's counts and her faith. Tammy was super happy. We chatted a bit and hung up. Moments later, the doctors came in, making their rounds. They said her counts were 40. I was disappointed, but I knew that was much more likely. Tracy was still in the room, checking Natalie's lines. She looked mortified. I told her not to worry about it, because at least the counts are going up.

After they left, Tracy raced out to check the computer again. She returned and apologized profusely. She had looked at the wrong line on the computer; Natalie's white blood cell counts were at 400, but her ANCs were only at 10. After Tracy left, I talked to Natalie a bit and asked if she was mad at Tracy or at God. "A little bit," she replied, then went back to playing on her DS.

Me? I'm a little disappointed, but I'm more disappointed in my lack of faith and my cowardice. It can hurt to believe, but am I doing more damage by not believing?

Natalie's Appetite is Back

2009-03-25T21:11:00.000-07:00

Natalie is eating again. Yeah! Yesterday she ate half of a grilled cheese sandwich and a little bit of a snickerdoodle cookie. Today she had some bites of a snickerdoodle cookie for breakfast, a whole grilled cheese sandwich for lunch, and Grant was heating up an uncrustable peanut butter and jelly sandwich for Natalie when I left the hospital tonight. Oh, she also ate a lot of the Hello Kitty whistle candies that Christine gave to her.

We still need her counts to go up. They were at 10 last night so don't know what they are tonight. They did take her off 2 of the 3 antibiotics she was on so we're hoping that may help her counts go up.

Natalie is doing well. We've been making stuffed bunnies and elephants out of t-shirts. So far, we've made a mama bunny, papa bunny, baby bunny, mama elephant and baby elephant. She has decided that she is not going to give them real names like her elephants though. They are not as perfect as her Gran's bunnies since we're stitching and cutting them by hand. Natalie designs the bunnies and stuffs them. I'm in charge of stitching them since it makes me nervous to see Natalie working with a sharp needle with her low platelet count.

We've also been playing the paper doll game that her Auntie Tracy sent to her. She loves that game and we play it every day at least once a day.

Grant and I have been taking turns to stay overnight with Natalie since it's grueling be there when she is on antibiotics. Every night we have to deal with the symphony of beeps from the IV infusion equipment througout the night as well as the numerous bathroom runs Natalie needs to take because of the high volume of liquids they are infusing into her body to flush the medicines through. Last night was the worst because right when I started to fall asleep, somebody started banging on pipes upstairs to fix something from 5am-6am. Then at 6 am, the hospital decided to do a fire alarm test with the fire alarms. At 7 am, I posted up our "Do Not Disturb" sign outside the door so that Natalie and I could sleep for a bit. Actually, it was for me to sleep. Natalie can sleep through a hurricane. We didn't wake up until 11 am today. When people comment that we like to sleep in, I have no idea where to start to explain to them that we are actually not sleeping in. They just have no idea how it feels to live in a hospital room.

On a completely different note, we would like to ask everyone to keep Grant's grandma in their prayers. She came down with pneumonia and the doctors don't think she has enough strength to fight through it. We are sad because we really wanted to go down to see her as a family when Natalie was done with her treatments. Please pray that she can fight through it.

Make A Wish

2009-03-24T14:19:00.000-07:00

As many of you know, Natalie's big wish when she is done with her treatment is to go to Disneyworld. Here is something cool that we can all do to help with funding her wish and the wishes of others in the bay area:

Recipe to help Make A Wish Foundation receive funding for a wish!

1. Go to www.StirringUpWishes.com
2. Vote for the Greater Bay Area chapter
3. Repeat daily
4. Enjoy knowing YOU are helping to fund a wish!

Natalie's counts are back down to 10 today, but she seems to be in good spirits. She wants to make butter tonight so we'll see how that goes.

CORRECTION: Natalie's counts are at 30.

2009-03-23T22:53:00.000-07:00

Didn't mean to short-change my girl.
-g

Natalie's counts are at 20.

2009-03-23T19:28:00.000-07:00

-grant
Slow and steady wins the race. . .

Natalie is tons better. She has more energy and is doing some art right now with a UCSF volunteer.

I got a ton of help this Saturday at home with her new bed. First, Adano and Gene came to help tear down the old bed and futon. Then Gene, Sean and I went to pickup Natalie's new bed. Geno's Highlander almost got hit by a wildman driving a pickup, but Natalie's angel was on the job and they stopped in time. Gene finished the delivery and took off.

Sean and I put the bed together. I had him bring some of the small boxes upstairs. Then he opened them and took the pieces out of the packing. He held up the headboard while I positioned the sides and handed me some of the small pieces.

Don showed up and helped me toss the packaging in the recycling bin, then we filled up his truck with the old stuff. It took two trips! A family in our church had a house fire, but they are currently staying in a hotel. Don is going to store our stuff in his garage until the family has a more permanent home.

Alvin showed up right when we were finishing up with Don's 2nd load. Don took off, then Armando brought his truck and we drove over to Tony's place. Tony heard that Natalie was getting a new bed and wanted to see if Sean wanted his old bunkbeds. It just so happened that Tony had just gotten new beds for his sons, so we scored their nice wooden bunkbed.

Alvin, Sean and I drove together and Armando drove separately. We went up Tony's steep driveway, then I left Sean in the car and ran to see Tony's new puppy. Yarg, I fergot me son! I carried Sean in and showed him the puppy. He didn't want to get licked, but he wandered around until he found the electric slot cars. He played with the cars while we loaded up. I asked him later that night and Sean said that was his favorite part of the day. (Yes, even better than helping me. I was kinda hard on him. "Gimme the little piece. No, the little piece! The other little piece." *sigh*)

We went back home, unloaded the, ahem, certified preowned bunkbed, put it together, then they left. There were a lot of people involved and it was pretty car-azy morning, but it all worked out. I was stressed because there were so many moving pieces and I didn't have solid commitments. We had a lot of help, so I wasn't that tired physically, but I was more mentally exhausted. Too much jumping to conclusions?

I spent the night at the hospital Saturday. Natalie is on 3 different antibiotics, plus they are doing 4 hour feeds. Then there is the normal checking vital signs (every 4 hours) and bathroom breaks. That makes for many interruptions throughout the night. We can't really sleep in, because they bring breakfast, take out our trash, check for dirty linen, yadda, yadda, yadda. Yadda. Yadda? I made up a do not disturb sign and taped it on the door handle. I figure it buys me maybe another hour of undisturbed rest.

10 is better than 0

2009-03-22T21:05:00.000-07:00

Natalie's ANC was at 10 last night. Also, they are seeing some monocytes, which is good. Usually, the neutraphils come right after the monocytes. We hope they are up more from last night.

She seems to be back to normal. She's been energetic most of the day, although a little fiesty. (Sorry Yolanda! Natalie does want you to come back and has a note for you if you want to come back to see her next week.) We will take fiesty over listless anytime though.

She is back to asking a million questions to anyone who comes in. Right now, she is tormenting one of the PCAs (patient care assistants) with her questions. He just said that she is the only person ever in the history of all the patients on 7 Long who has ever asked him why the sticker on the oxygen machine is at a degree. She's asked him probably over 30 questions so far, including why he has more hair in the picture on his badge. I told him to run out while he can, but he seems to be enjoying her questions.

She woke up playing with her DS instead of sleeping half the day. She also told us that she feels much better.

Thank you for all your prayers. Natalie still has not eaten any solid food since Tuesday, but they are giving her a nutritional drink through her nose feeding tube. That should give her 75% of her daily nutritional requirement. We are hoping that she can eat something solid tomorrow.

Getting A Little Better

2009-03-21T13:19:00.000-07:00

I am sitting in complete darkness typing this and trying to stay as quiet as possible while Natalie is sleeping. Natalie is getting a little better. Her high fever broke Thursday evening. She didn't have a fever all day Friday, but had a low grade fever at midnight. She seems a little better, but still weak since she has not eaten anything for 3 days. They are giving her some nutrition through her nose feeding tube to help her heal. The rate is very slow though so it doesn't upset her tummy. We are hoping that she can tolerate it so that they can increase the rate tomorrow. Her ANC is still 0. This is probably the worst round we have gone through so far and makes me appreciate the many times that Natalie has been energetic. She had a fever in the first round, her counts were climbing so it wasn't as scary as this. I think I would rather take her energy any day to this.

The doctors say this is what they actually expect from Natalie and that the prior rounds were unusually amazing.

Last night, she was a little back to her normal curious self and asking her nurse lots of questions about his day, what he picked up for dinner, about the birthday party he went to and if they had a cake there, and if he ate any, and why not, and why he wore glasses the other night, etc.. Then, her stomach started bothering her from the nutrition so she was in tremendous pain. She didn't want to talk anymore.

The nurses tell me they know Natalie is not feeling well when she doesn't ask at least 5 questions a day.

We are hanging in there. Of course, it's all scary and hard but we are hoping that Natalie's counts go up soon.

Please Pray

2009-03-18T14:49:00.000-07:00

Natalie spiked a fever last night and they started antibiotics on her right away. Fever is still high today and the blood cultures they did show signs of a strep infection. We are really praying it's minor and her fever will break today.

We don't know how she got it but since her counts are low, I was told that she could have easily picked it up from any body who has been around her even if they didn't show signs of it because their body has immunity to fight it.

Please pray for Natalie and us.