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, September 13, 2010
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.
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.
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.
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.
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.
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!
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!
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