Monday, September 13, 2010

Day 130

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.

Monday, July 26, 2010

Day 81- Time At Home

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.

Wednesday, June 30, 2010

Day 55

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.

Friday, June 25, 2010

Day 50

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.

Thursday, June 24, 2010

Day 49

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.

Tuesday, June 22, 2010

Day 47- Please Pray for Natalie!

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.

Sunday, June 20, 2010

Day 45

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!

Saturday, June 19, 2010

Day 44

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.

Friday, June 18, 2010

Day 43

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.

Thursday, June 17, 2010

Biopsy Today- Day 42

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.

Wednesday, June 16, 2010

Sean's note

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

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.

Tuesday, June 15, 2010

Days 38, 39 & 40

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!"

Saturday, June 12, 2010

Days 36 and 37

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.

Thursday, June 10, 2010

Day 35

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.

Wednesday, June 9, 2010

Day 34

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.

Tuesday, June 8, 2010

Day 33

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.

Monday, June 7, 2010

Days 30, 31 & 32

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.

Friday, June 4, 2010

Day 29

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.

Thursday, June 3, 2010

Biopsy Today

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.

Wednesday, June 2, 2010

Day 27

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.

Tuesday, June 1, 2010

Day 26

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

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.

Saturday, May 29, 2010

Days 22 & 23

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.

Thursday, May 27, 2010

Days 17, 18, 19, 20, & 21

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.

Saturday, May 22, 2010

Days 14, 15 & 16

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.

Wednesday, May 19, 2010

Days 12 & 13

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!

Monday, May 17, 2010

Days 10 and 11

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.

Saturday, May 15, 2010

Day 9

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!

Friday, May 14, 2010

Day 8

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.

Thursday, May 13, 2010

Days 6 and 7

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.

Tuesday, May 11, 2010

Day 5

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!

Monday, May 10, 2010

Day 4

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.

Sunday, May 9, 2010

Day 3

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.

Saturday, May 8, 2010

Day 2

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!

Friday, May 7, 2010

Day 1

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.

Thursday, May 6, 2010

Transplant Day

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!

Tuesday, May 4, 2010

Day -2

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.

Saturday, May 1, 2010

Day -5

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.

Friday, April 30, 2010

Day -6 Transplant

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.

Wednesday, April 28, 2010

Bone Marrow Transplant- Day 3

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.

Sunday, March 28, 2010

Counts Creeping Up

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.

Monday, March 15, 2010

A Little Update

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!

Wednesday, March 3, 2010

Important Prayer Request

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.

Tuesday, February 23, 2010

Match Found!

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

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

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

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

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

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

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

Tuesday, February 16, 2010

Counts Slowly Going Up

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

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

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

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

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

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

Monday, February 15, 2010

Valentines Day

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

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

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

Butterflies In Natalie's Room

Thursday, February 11, 2010

A good night, sneak peek, and food. 02.11.10

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

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

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

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

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

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

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

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

Still Waiting

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

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

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

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

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

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

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

Friday, February 5, 2010

Our Friday

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

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

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

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

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

Thursday, February 4, 2010

Fever and Biopsy

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

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

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

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

Natalie's website, 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.

Sunday, January 31, 2010

More Rainbows

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.

Saturday, January 30, 2010

Good Day Yesterday

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.

Thursday, January 28, 2010

In the Hospital

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.

Saturday, January 16, 2010

We Need Prayers For Tuesday

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.