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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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.

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!"

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.

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.

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.

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.

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.

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.

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.