Give thanks to the Lord,
For he is good.
Give thanks to the Lord,
His love endures forever.
Over the past week, we've been having a tough time dealing with all of the painful memories from last year. Every day reminds us of the events that happened a year ago, the week before Thanksgiving. But this morning we woke up grateful. Tammy and I are grateful to be sleeping next to each other in our own bed. We're excited about going down to Fresno to be with family. Tammy spent a good chunk of yesterday cooking up a storm.
What are we grateful for?
We're grateful for God for helping Natalie get better. She had her 6th checkup and she is still in remission. Dr. Clay, her oncologist, said that 6 months is a big deal and he was happy that we made it.
We're grateful to be together as a family. Yes, the kids fight more than we like, but they fought a bit in the hospital, too. The point is, we are home together.
We're grateful for our family:
Mom and dad, thank you for coming as soon as we needed you and listening when I needed you to.
Troy, thank you for praying.
Ma, thank you for watching Sean and spending nights in the hospital. I know it was hard for you.
Ba, thank you for letting ma help us. We know it is a big sacrifice.
Tracy, thank you for giving us a whole month. You helped us through a tough spot. Sei, Cameron, and Ava, thank you for letting your wife and mom go.
Dinny and Jason, thank you for spending your vacation on us. We needed all the help we could get.
Scott, thank you for coming and for the Cinnabons.
John, thank you for staying with Ma and playing with Sean. We worried constantly about Natalie and frequently about Sean. We didn't want him to be neglected and bounced around from people to people and place to place. Keeping him home with family relieved a great
pressure.
Natalie, thank you for being a trooper. You made the best of a terrible situation and you kept your spirit throughout the whole ordeal.
Sean, thank you for praying every night for Natalie. Thank you for vehemently reassuring your mom that Natalie is going to be all right.
Tammy, thank you for thinking of me even when there were so many other people and things to think about. You made me feel important.
Medical staff:
Dr. Clay, thank you for being sincere, honest, and optimistic.
Robin, thank you for the 2 minutes. If I had to pick my most positive healthcare experience ever, that would be it. We needed to know that someone would give us 2 minutes.
Dr. Matthay, thank you for your sense of humor.
Dr. Bannerjee, thank you for standing firm. We really wanted to go home, but you were right.
Amber, thank you for taking the initiative and cutting Natalie's hair. It hurt, but it needed to be done.
Felix, thank you for the candy.
Tatiana, thank you for the expert blood draws.
Nancy, thank you for always taking your time. You help us feel relaxed.
Dr. Smith, thank you for your youthful vigor and cheer.
Yolanda, thank you for all the elephant journeys, and especially for not being easily hurt. You'll make a great pediatrician.
Christine, thank you for teaching Natalie and Tammy to bead and for telling
us all the good restaurants around UCSF.
Friends:
Weizhu and Patty, thank you for teaching Natalie the recorder.
Zach and Becky, thank you for coming and playing Pokemon sushi with us.
Elbert, Stella, Jonathan, and Elliot, thank you, thank you, thank you for letting us share your house and washing machine and kitchen. A huge piece of home.
Ray, thank you for coming.
Sam, thank you for aggressively listening.
DJ, thank you for helping us coordinate and clean our place.
Geno and Maritza, thank you for talking to us as a couple.
John and Michelle, you understood what it means to be in the hospital. Hospital socks were an extra special touch.
Scott, thank you for talking it out and giving me perspective about our suffering.
Margo, thank you for the CD and study. The CD can still make us cry.
Thank you for everyone who prayed for us, brought us meals, cleaned or decorated our house.
Juan, I still have your Pyrex dish. Thank you for being patient with us!
Gregory Gardens, thank you for the 100 rolls of tape, wonderful letters, and especially the origami crane mobile Natalie has it hanging in her room and we look at it every night.
Miss Danna, thank you for the special trips.
Lisa, thank you for watching out for us at school.
Terry and Art, thank you for the camera!
Mitel, thank you for the DS and games.
Thank you for all of you who donated blood.
There are so many other people we are grateful for and we apologize for not personally thanking everyone. We've thought about way more people than we have entered above, but we need to go to sleep so we can stay healthy.
Sunday, December 6, 2009
Update Finally!
For all our friends and family who may be wondering how we are doing, we apologize for taking so long to post an update since the last one we posted in September. Life just has a way of occupying all of our time and we forget that we have this blog to communicate with all of you.
We are doing well and Natalie's counts looked great on her last monthly UCSF visit in early November. That was the 6 month after treatment visit and her doctor said that it is really a milestone visit since it's been a full 6 months since she was released. She has also been in remission for almost a year. (Grant's note: Natalie's leukemia wasn't showing up after her first round of chemo, which was almost12 months ago. We wanted to go home, but the medical protocol is to complete the entire 5 rounds of chemo. You don't stop when it looks good, you keep hitting it so you're sure you get it all.)
Natalie's visits at UCSF will now be every other month for the next six months. After that, it becomes every 4 months. Yeah!! We took her to a fancy restaurant that night (The Duck Club in Lafayette) to celebrate. Natalie loves going to fancy restaurants because they make her feel special and she gets to dress up almost like a princess.
We also had our big Make-A-Wish trip to Disneyland in early October! We sent the link with pictures of that amazing trip to some of you, but if we miss anybody who would love to see the pictures, please let us know and we'll send the link to you. We had a wonderful time and Natalie's big smile in the pictures really sums up the trip. She had the time of her life. When she was in the makeover chair of the Bibbodi Bobbidi Boutique getting her princes makeover, I (Tammy) started tearing up just thinking about how far Natalie has come from her hospital days. She's so energetic and strong now that I forget that there were a lot of days she spent in the hospital listless and in pain. I have forgotten that she once was so skinny and malnourished that the hospital staff had to weigh her every day to make sure her weight did not drop too dangerously low. When I think of those days, there is a mixture of sadness and joy. The sadness comes because it's still very painful for us to remember our Natalie being so sick. The joy comes from the gratitude we feel for having our family back together again.
Grant's note: My high point of the trip was seeing Sean get picked for the Jedi Training Camp at Disneyland. Sean and I went when Tammy and Natalie were at the BBB (Bibbodi Bobbidi Boutique), but Sean didn't get picked to go up on stage. He sorta lost interest, so we walked out. Our friends told us that kids wearing Star Wars gear or holding up signs usually got called up on stage, so the next day, I went to work. I cut up Sean's Lego X-Wing box and folded it in half. The top still showed the X-Wing and on the bottom I wrote in big bold letters: The FORCE is with me! We got there early and sat in the front. I carefully pulled out the sign and got ready. Meanwhile, Tammy talked to one of the ushers and told them we were on a Make A Wish trip, but the ushers said the lead actor made the choices, so they couldn't promise anything. I held up the sign and prayed. When the lead actor started making his choices, Sean was the very first pick! I was super happy. Sean has suffered, too, and it is easy to forget him, but that was his show. He deserved it!
We almost have a normal life again, but not quite. With the intensive treatment Natalie got, her body is more sensitive than the average child to the environment around her. She's been having bad allergies, which she had around this time last year too. Her pediatrician referred us to a specialist since Natalie's health history is more complicated than a normal pediatric patient. The intersting thing is that the specialist turned out to be the same guy Grant goes to for his allergies. Natalie thought that was pretty funny that she shares the same doctor with her papa.
We also had to take Natalie and Sean out of school for the month of October until Natalie got her H1N1 vaccine. There were a couple of cases of the H1N1 virus at her school. After patiently calling around, we finally got her the vaccine right before Halloween. We were happy about that since she got to go trick-or-treating as Minnie Mouse! (Grant's note: Wow, I owe you pix from there, too.)
We are doing well and Natalie's counts looked great on her last monthly UCSF visit in early November. That was the 6 month after treatment visit and her doctor said that it is really a milestone visit since it's been a full 6 months since she was released. She has also been in remission for almost a year. (Grant's note: Natalie's leukemia wasn't showing up after her first round of chemo, which was almost12 months ago. We wanted to go home, but the medical protocol is to complete the entire 5 rounds of chemo. You don't stop when it looks good, you keep hitting it so you're sure you get it all.)
Natalie's visits at UCSF will now be every other month for the next six months. After that, it becomes every 4 months. Yeah!! We took her to a fancy restaurant that night (The Duck Club in Lafayette) to celebrate. Natalie loves going to fancy restaurants because they make her feel special and she gets to dress up almost like a princess.
We also had our big Make-A-Wish trip to Disneyland in early October! We sent the link with pictures of that amazing trip to some of you, but if we miss anybody who would love to see the pictures, please let us know and we'll send the link to you. We had a wonderful time and Natalie's big smile in the pictures really sums up the trip. She had the time of her life. When she was in the makeover chair of the Bibbodi Bobbidi Boutique getting her princes makeover, I (Tammy) started tearing up just thinking about how far Natalie has come from her hospital days. She's so energetic and strong now that I forget that there were a lot of days she spent in the hospital listless and in pain. I have forgotten that she once was so skinny and malnourished that the hospital staff had to weigh her every day to make sure her weight did not drop too dangerously low. When I think of those days, there is a mixture of sadness and joy. The sadness comes because it's still very painful for us to remember our Natalie being so sick. The joy comes from the gratitude we feel for having our family back together again.
Grant's note: My high point of the trip was seeing Sean get picked for the Jedi Training Camp at Disneyland. Sean and I went when Tammy and Natalie were at the BBB (Bibbodi Bobbidi Boutique), but Sean didn't get picked to go up on stage. He sorta lost interest, so we walked out. Our friends told us that kids wearing Star Wars gear or holding up signs usually got called up on stage, so the next day, I went to work. I cut up Sean's Lego X-Wing box and folded it in half. The top still showed the X-Wing and on the bottom I wrote in big bold letters: The FORCE is with me! We got there early and sat in the front. I carefully pulled out the sign and got ready. Meanwhile, Tammy talked to one of the ushers and told them we were on a Make A Wish trip, but the ushers said the lead actor made the choices, so they couldn't promise anything. I held up the sign and prayed. When the lead actor started making his choices, Sean was the very first pick! I was super happy. Sean has suffered, too, and it is easy to forget him, but that was his show. He deserved it!
We almost have a normal life again, but not quite. With the intensive treatment Natalie got, her body is more sensitive than the average child to the environment around her. She's been having bad allergies, which she had around this time last year too. Her pediatrician referred us to a specialist since Natalie's health history is more complicated than a normal pediatric patient. The intersting thing is that the specialist turned out to be the same guy Grant goes to for his allergies. Natalie thought that was pretty funny that she shares the same doctor with her papa.
We also had to take Natalie and Sean out of school for the month of October until Natalie got her H1N1 vaccine. There were a couple of cases of the H1N1 virus at her school. After patiently calling around, we finally got her the vaccine right before Halloween. We were happy about that since she got to go trick-or-treating as Minnie Mouse! (Grant's note: Wow, I owe you pix from there, too.)
Saturday, September 12, 2009
Thursday Appointment
We've been busy transitioning Natalie and Sean to school that we haven't updated the blog as much as we want to.
Natalie had her monthly blood test and UCSF visit this past Thursday. We always hold our breath waiting for the results. Leukemia still feels like a monster, lurking persistently in our mind, looming over our life, threatening to re-enter it without warning. I'm hoping for the day that we no longer feel the proximity of it and it feels like it is so distant like another lifetime.
We were so happy to hear that Natalie's blood looks great. Hemoglobin is at 14, platelets are at 300,000 and ANC 4,000. We hope and pray it continues to stay strong and healthy for many, many, many years.
Thank you all for your continued prayers and support.
Sean is really loving kindergarten. The school had their annual community parade yesterday. He was looking forward to that parade since last week. After so many years of watching is older sister in the parade, he would finally be in the parade. He kept asking me all through the week, "Are you thinking of what I'm thinking?"
"Probably not," I would reply to him. "What are you thinking?"
"The parade is on Friday!"
It was a joy to see him so happy that day.
Natalie is slowly getting used to school. She still has some awkward days where she feels sad that she is so different, but in general she is enjoying being back in school.
Natalie had her monthly blood test and UCSF visit this past Thursday. We always hold our breath waiting for the results. Leukemia still feels like a monster, lurking persistently in our mind, looming over our life, threatening to re-enter it without warning. I'm hoping for the day that we no longer feel the proximity of it and it feels like it is so distant like another lifetime.
We were so happy to hear that Natalie's blood looks great. Hemoglobin is at 14, platelets are at 300,000 and ANC 4,000. We hope and pray it continues to stay strong and healthy for many, many, many years.
Thank you all for your continued prayers and support.
Sean is really loving kindergarten. The school had their annual community parade yesterday. He was looking forward to that parade since last week. After so many years of watching is older sister in the parade, he would finally be in the parade. He kept asking me all through the week, "Are you thinking of what I'm thinking?"
"Probably not," I would reply to him. "What are you thinking?"
"The parade is on Friday!"
It was a joy to see him so happy that day.
Natalie is slowly getting used to school. She still has some awkward days where she feels sad that she is so different, but in general she is enjoying being back in school.
Thursday, September 3, 2009
Back To School
It was an emotional week in our house as both kids started their school year. Natalie's first day was a little rough as she did get some comments from her classmates about her hair. She was also very sad that most of her friends are in the other third grade class. She knows a lot of the boys in her class and they all were happy to see her back, but she really wanted to be with her girlfriends. We are working on helping her build new friendships with the other girls in her class. We were afraid that she would not want to go back to school after her first day, but she seems willing to keep going and overcome the different challenges. She inspires us so much with her spirit. We know it's hard for her and I was almost close to pulling her out of school if it was going to stress her too much. She seems to be doing so much better after Monday so I'm glad we hanged in there.
Sean loves kindergarten! On the first day of school, he was as cool as a cucumber. No tears at all. He had this look on his face like, "Okay, you can leave now. I'm all good." I was the one not knowing what to do with myself while both kids were in their classes. Sean comes home every day telling me how much fun he had at school.
Eileen and Gina from UCSF came to Natalie's school today to do their presentation for both of the third grade classes on cancer and how they can help Natalie transition back to school. Natalie was so happy to see both Eileen and Gina that she couldn't stop talking to both classes about her experience at UCSF. We were so grateful for the presentation and hope that they answered all the questions the kids have about Natalie. We hope both classes become like family to Natalie the way the hospital staff became like family to her as they go through her recovery with her this year.
Sean loves kindergarten! On the first day of school, he was as cool as a cucumber. No tears at all. He had this look on his face like, "Okay, you can leave now. I'm all good." I was the one not knowing what to do with myself while both kids were in their classes. Sean comes home every day telling me how much fun he had at school.
Eileen and Gina from UCSF came to Natalie's school today to do their presentation for both of the third grade classes on cancer and how they can help Natalie transition back to school. Natalie was so happy to see both Eileen and Gina that she couldn't stop talking to both classes about her experience at UCSF. We were so grateful for the presentation and hope that they answered all the questions the kids have about Natalie. We hope both classes become like family to Natalie the way the hospital staff became like family to her as they go through her recovery with her this year.
Tuesday, August 18, 2009
Preparing for School
Natalie got the green light to go back to school. Acutally, her doctors urged us to put her back in school because she's missed so much of her childhood already. We just have to be cautious with making sure Natalie washes her hands a lot in school and do the best we can to help her not get sick.
We met with her new principal a week ago to discuss the transition. She was really nice and supportive of providing whatever support is needed to help Natalie do well. She has been a principal for many years and Natalie is her first case of working with a child who had cancer. We are going to start with a reduced schedule for Natalie and see if she has the stamina to handle full days. This is a little scary for us all and we are going to need support and help to get through the transition.
If it was up to me, I would have Natalie stay home for another year just to make sure that she was good and ready to be back. By then, her hair will be long again and she would not have to hear the comments she hears all the time from kids now like, "Why did you cut your hair?" Also, she would be stronger physically.
Last night, one of her classmates rode his bike over to our house to see her. He lives one block from us and has seen Natalie ride her scooter in the evenings down his street. A couple of nights ago he tried to get her attention, but she didn't recognize him because she was riding her scooter really fast. It caught us by surprise to see this little blonde boy all by himself on a bicycle that was too big for him, asking, "Is she done with cancer?" Natalie was a little shy and also surprised that he knew where she lived. I told him that Natalie is done with her treatment and going back to school in a couple of weeks. He just smiled, turned his bicycle around, and said, " I have to go tell my mom!"
The truth is Natalie is nervous about how her classmates will react to her going back to school. Eileen (Natalie's child life specialist at the hosptial) has volunteered to come out to her class to explain to the kids where Natalie has been and what cancer is to help with Natalie's transition. This helps the kids to know that what Natalie had is not contagious and why her hair is short. Natalie wants her to come because she wants to see Eileen again. Just the mention of Eileen's name makes her smile. She also does not want to explain a million times to all her friends why her hair is short. She rather have Eileen do that.
Sean will also start kindergarten since Natalie is going back to school. He had his kindergarten assessment last Thursday and did great. The teacher who assessed him said to me afterwards, "He is amazing! He is totally ready for kindergarten and beyond. I can tell that you've worked a lot with him to get him ready." I told her that I really haven't done anything with him. I was even honest in his paperwork that his favorite toy is his DS and he does watch way more television than he should. In fact, he has seen practically every Pokemon movie that is out there. If she only knew where I've spent most of the last year of my life, she would've believed me.
My biggest challenge as a mom is to not hover over my children. I do feel guilty that I work. So every moment I have with them, I do hover. I realize one day last week that one of my job as a mom is to help my kids be independent adults one day. They can't really learn independence if I am constantly there. Natalie's principal even said me in our meeting last week that I need to not hover and let other people share in the joy of raising my children. So, I am going to try my best to not hover.
We'll keep you posted on how things go with going back to school.
On a different note, we do have a special request for all of Natalie's angels. We have a friend of the family who is battling pancreatic cancer. Her name is Terry Wise and she lives in Indiana. She was diagnosed with pancreatic cancer shortly before Natalie was discharged from the hospital. She has her own blog on CarePages named, "Terry's Angels", which was inspired by Natalie's blog. We've been praying for her every day, but would like to lend some of Natalie's angels to pray for her too to win her battle with cancer.
We met with her new principal a week ago to discuss the transition. She was really nice and supportive of providing whatever support is needed to help Natalie do well. She has been a principal for many years and Natalie is her first case of working with a child who had cancer. We are going to start with a reduced schedule for Natalie and see if she has the stamina to handle full days. This is a little scary for us all and we are going to need support and help to get through the transition.
If it was up to me, I would have Natalie stay home for another year just to make sure that she was good and ready to be back. By then, her hair will be long again and she would not have to hear the comments she hears all the time from kids now like, "Why did you cut your hair?" Also, she would be stronger physically.
Last night, one of her classmates rode his bike over to our house to see her. He lives one block from us and has seen Natalie ride her scooter in the evenings down his street. A couple of nights ago he tried to get her attention, but she didn't recognize him because she was riding her scooter really fast. It caught us by surprise to see this little blonde boy all by himself on a bicycle that was too big for him, asking, "Is she done with cancer?" Natalie was a little shy and also surprised that he knew where she lived. I told him that Natalie is done with her treatment and going back to school in a couple of weeks. He just smiled, turned his bicycle around, and said, " I have to go tell my mom!"
The truth is Natalie is nervous about how her classmates will react to her going back to school. Eileen (Natalie's child life specialist at the hosptial) has volunteered to come out to her class to explain to the kids where Natalie has been and what cancer is to help with Natalie's transition. This helps the kids to know that what Natalie had is not contagious and why her hair is short. Natalie wants her to come because she wants to see Eileen again. Just the mention of Eileen's name makes her smile. She also does not want to explain a million times to all her friends why her hair is short. She rather have Eileen do that.
Sean will also start kindergarten since Natalie is going back to school. He had his kindergarten assessment last Thursday and did great. The teacher who assessed him said to me afterwards, "He is amazing! He is totally ready for kindergarten and beyond. I can tell that you've worked a lot with him to get him ready." I told her that I really haven't done anything with him. I was even honest in his paperwork that his favorite toy is his DS and he does watch way more television than he should. In fact, he has seen practically every Pokemon movie that is out there. If she only knew where I've spent most of the last year of my life, she would've believed me.
My biggest challenge as a mom is to not hover over my children. I do feel guilty that I work. So every moment I have with them, I do hover. I realize one day last week that one of my job as a mom is to help my kids be independent adults one day. They can't really learn independence if I am constantly there. Natalie's principal even said me in our meeting last week that I need to not hover and let other people share in the joy of raising my children. So, I am going to try my best to not hover.
We'll keep you posted on how things go with going back to school.
On a different note, we do have a special request for all of Natalie's angels. We have a friend of the family who is battling pancreatic cancer. Her name is Terry Wise and she lives in Indiana. She was diagnosed with pancreatic cancer shortly before Natalie was discharged from the hospital. She has her own blog on CarePages named, "Terry's Angels", which was inspired by Natalie's blog. We've been praying for her every day, but would like to lend some of Natalie's angels to pray for her too to win her battle with cancer.
Friday, August 7, 2009
Great Day
Yesterday was Natalie's monthly visit to UCSF and blood draw. The morning started with waking up to the sound of Sean's little legs running with delight down the hallway to the living room in search of his DS. He was excited about his last battle with Gym Leader Cynthia on Pokemon Platinum because the victory would mean that after months of battle, he would officially be the champion and arrived at the highest level possible with that game. We've been limiting his DS time to only an hour a day so he's been patiently waiting for his last battle. The battle was quick and he emerged victorious! We have never seen anyone so excited for a battle.
We've been battling Natalie's cancer and transition with less enthusiasm. As usual, we woke up with a little anxiety about how the day would go. So Sean's energy and happiness was much needed and an unexpected gift going into the day.
We went first to John Muir for Natalie's blood draw. Nancy, the nurse who normally performs the draw, was away this week at Camp Okizu (Camp for Kids With or Recovered From Cancer). Natalie was a little sad she wasn't there, but was happy to see Dr. Smith. The Draw took less than 30 seconds and Natalie did great.
We then went to UCSF to see Dr. Clay at the clinic. Yolanda came to hang out with us before our visit. She just got back from China and had pictures to show. Natalie was really excited and so happy to see Yolanda. She almost jumped out of the car when she saw Yolanda on the sidewalk when we pulled in. She was happy and talkative throughout her whole appointment.
We also got good news that we can stop her meds which means Natalie can start going out during the day again! She also can be around people again. We just have to be cautious about handwashing and keeping her healthy.
It was great news and a great day for us and Natalie. Thank you for all your prayers!
We've been battling Natalie's cancer and transition with less enthusiasm. As usual, we woke up with a little anxiety about how the day would go. So Sean's energy and happiness was much needed and an unexpected gift going into the day.
We went first to John Muir for Natalie's blood draw. Nancy, the nurse who normally performs the draw, was away this week at Camp Okizu (Camp for Kids With or Recovered From Cancer). Natalie was a little sad she wasn't there, but was happy to see Dr. Smith. The Draw took less than 30 seconds and Natalie did great.
We then went to UCSF to see Dr. Clay at the clinic. Yolanda came to hang out with us before our visit. She just got back from China and had pictures to show. Natalie was really excited and so happy to see Yolanda. She almost jumped out of the car when she saw Yolanda on the sidewalk when we pulled in. She was happy and talkative throughout her whole appointment.
We also got good news that we can stop her meds which means Natalie can start going out during the day again! She also can be around people again. We just have to be cautious about handwashing and keeping her healthy.
It was great news and a great day for us and Natalie. Thank you for all your prayers!
Friday, July 10, 2009
Results Are Good
The lab results from Natalie's blood draw yesterday look good. Natalie's blood and bone marrow are doing what they are suppose to do. Her hemoglobin is at 12.5. Platelets and ANC are stable at around the same numbers as last time. We tried not to bombard her poor doctor with too many questions yesterday as we've done in the past, but we did ask again when we could be around crowds. The answer is still the same that it is in Natalie's best interst that she does not get sick, and it's worth it to wait. At this point, if she does get sick, she would have to go into the emergency room and they would treat it really seriously. We definitey don't want that. Also, with the swine flu virus still going strong, it's probably best to play it safe with the kids.
So, we continue to collect creative ideas for the kids to have fun this Summer without exposing them to too many germs or the sun. Tonight, we took an idea that one of our friends gave us, and we are taking the kids out to a drive-in movie. We are going to watch "Ice Age". Both kids are bathed, in their pjs, have their snacks and blankets ready for the 8:50 show.
Tomorrow, we are going to stay a night at Embassy Suites in town so that the kids can swim in the in-door pool and feel somewhat like they are on vacation. At least it is something different for them to look forward to.
We've had good days and bad days dealing with the transition. Sometimes we do feel so overwhelmed thinking about getting Natalie and Sean ready to go back to school. It's hard to shake the fear of her getting sick from being at school with other kids. There have been days that the kids are so bored at home that they start getting on each other's nerves and my nerves. But, when we all remember how hard it was to be apart from each other so many months, we are super grateful for the time together. We wouldn't trade that for anything.
So, we continue to collect creative ideas for the kids to have fun this Summer without exposing them to too many germs or the sun. Tonight, we took an idea that one of our friends gave us, and we are taking the kids out to a drive-in movie. We are going to watch "Ice Age". Both kids are bathed, in their pjs, have their snacks and blankets ready for the 8:50 show.
Tomorrow, we are going to stay a night at Embassy Suites in town so that the kids can swim in the in-door pool and feel somewhat like they are on vacation. At least it is something different for them to look forward to.
We've had good days and bad days dealing with the transition. Sometimes we do feel so overwhelmed thinking about getting Natalie and Sean ready to go back to school. It's hard to shake the fear of her getting sick from being at school with other kids. There have been days that the kids are so bored at home that they start getting on each other's nerves and my nerves. But, when we all remember how hard it was to be apart from each other so many months, we are super grateful for the time together. We wouldn't trade that for anything.
Wednesday, July 8, 2009
Update on Us
Sorry it's been so long since our last update. We've been busy as always with the kids.
We have some great pictures of Natalie that we will try to upload to the blog site when and if we get some down time.
This weekend was a pretty fun weekend for us. We were able to have a normal 4th of July despite trying to stay away from crowds. We started the day with going to the Pleasant Hill parade, and found a nice spot in a shaded corner to camp out with our folding chairs to see the parade. It was nice to see some friends there as well. Natalie was so excited to see two friends in the parade.
That evening we went over to hang out with our friends, the Hopkins. They went out of their way to make sure their house was sanitized and both of their kids were well before we came over for a BBQ. Natalie and Sean both got to play with kids their age and it was so relaxing. The great thing is that the Hopkins live just a couple of streets away from the College Park fireworks so we got great seats in their courtyard watching the show. It was actually one of the best shows we've seen. Sean and Natalie both loved it. The funny thing is that Sean did not even know what fireworks was before that night. When we asked him if he wanted to see fireworks, he asked, "What are fireworks?" I guess that neither the 4th of July we had in Lake Tahoe or the Martinez fireworks show we've seen in the past left a lasting impression on him. He was really into this one!
Tomorrow is Natalie's monthly blood draw and appointment at UCSF. I know we should be more relaxed with these appointments by now, but it's hard to not be nervous. We are sending this message out to ask all of you to please pray for the appointment and results to go well. We'll keep you posted on how it goes.
We have some great pictures of Natalie that we will try to upload to the blog site when and if we get some down time.
This weekend was a pretty fun weekend for us. We were able to have a normal 4th of July despite trying to stay away from crowds. We started the day with going to the Pleasant Hill parade, and found a nice spot in a shaded corner to camp out with our folding chairs to see the parade. It was nice to see some friends there as well. Natalie was so excited to see two friends in the parade.
That evening we went over to hang out with our friends, the Hopkins. They went out of their way to make sure their house was sanitized and both of their kids were well before we came over for a BBQ. Natalie and Sean both got to play with kids their age and it was so relaxing. The great thing is that the Hopkins live just a couple of streets away from the College Park fireworks so we got great seats in their courtyard watching the show. It was actually one of the best shows we've seen. Sean and Natalie both loved it. The funny thing is that Sean did not even know what fireworks was before that night. When we asked him if he wanted to see fireworks, he asked, "What are fireworks?" I guess that neither the 4th of July we had in Lake Tahoe or the Martinez fireworks show we've seen in the past left a lasting impression on him. He was really into this one!
Tomorrow is Natalie's monthly blood draw and appointment at UCSF. I know we should be more relaxed with these appointments by now, but it's hard to not be nervous. We are sending this message out to ask all of you to please pray for the appointment and results to go well. We'll keep you posted on how it goes.
Monday, June 22, 2009
Blood Draw Today
I took Natalie in this morning for another blood draw at John Muir Hospital to check her hemoglobin since it was on the low end the last draw. There were two security guards blocking the entrance. When they saw Natalie, they told us that kids under 16 were not allowed in the hospital anymore due to the swine flu virus. They did not want any kids bringing any germs into the hospital since they have sick patients inside. Good thing I did not bring Sean with us. It was only after I told them that Natalie had an appointment that they smiled and let us through.
Natalie had a big smile on her face as she was walking down the hallway to Dr. Smith's office. She loves going there to see Nurse Nancy and Dr. Smith just as much as she loves going to UCSF to see all staff there. If there is one bright spot through all this is that the people who work with kids like Natalie are the best. They do make the kids feel so special and loved. Another treasure we've discovered in our dark time is that our friends, family, co-workers and community are incredible people with incredible hearts.
Blood draw went well although it took longer than the 30 seconds that Nancy thought it would take. Results are good. Her hemoglobin is at 10.2, platelets 400,000, and ANC 2,600. Her body is producing blood on its own.
Natalie's weight is at 52.2 as a result of eating so well. Dr. Smith said her dad should give her an increase in her allowance since she is doing such a great job eating and drinking. I guess if she had an allowance, we would increase it. :-)
Thanks to the moms at Gregory Gardens Elementary who have been bringing over dinners to us, we've been eating really well. Thanks for all the yummy dinners everybody!
Natalie and Sean have been riding their bikes and scooters almost every day. We've been driving to the empty parking lot of the school and letting the kids ride around. We open the back of our highlander and have been having our own tailgate parties as the kids play. They love exploring there. The other day they searched for different color leaves and also saw a spider eating dinner (an ant that the spider had caught). Natalie found that fascinating.
Our next doctor's appointment is July 7th at UCSF. We'll try to update more on the blog. It's just been so busy for us trying to take care of the kids and trying to catch up at work.
Natalie had a big smile on her face as she was walking down the hallway to Dr. Smith's office. She loves going there to see Nurse Nancy and Dr. Smith just as much as she loves going to UCSF to see all staff there. If there is one bright spot through all this is that the people who work with kids like Natalie are the best. They do make the kids feel so special and loved. Another treasure we've discovered in our dark time is that our friends, family, co-workers and community are incredible people with incredible hearts.
Blood draw went well although it took longer than the 30 seconds that Nancy thought it would take. Results are good. Her hemoglobin is at 10.2, platelets 400,000, and ANC 2,600. Her body is producing blood on its own.
Natalie's weight is at 52.2 as a result of eating so well. Dr. Smith said her dad should give her an increase in her allowance since she is doing such a great job eating and drinking. I guess if she had an allowance, we would increase it. :-)
Thanks to the moms at Gregory Gardens Elementary who have been bringing over dinners to us, we've been eating really well. Thanks for all the yummy dinners everybody!
Natalie and Sean have been riding their bikes and scooters almost every day. We've been driving to the empty parking lot of the school and letting the kids ride around. We open the back of our highlander and have been having our own tailgate parties as the kids play. They love exploring there. The other day they searched for different color leaves and also saw a spider eating dinner (an ant that the spider had caught). Natalie found that fascinating.
Our next doctor's appointment is July 7th at UCSF. We'll try to update more on the blog. It's just been so busy for us trying to take care of the kids and trying to catch up at work.
Monday, June 15, 2009
My Eater Is Back
Natalie is doing really well. Her appetite seems to be back to normal. She is eating full meals and even wants a snack between meals and dessert. This is the Natalie we've known since birth and love; she has always loved food and all kinds of it. That is why it was so painful to see her barely eat a bite of anything in the hospital.
Natalie's energy level has also grown. She has been running up and down the stairs at home, riding her scooter outside, and doing art.
We hope her hemoglobin is way up from last Monday. We suspect it is from the way Natalie is acting, but will not get a formal confirmation until her blood draw next week.
The biopsy from last Tuesday is also good. It was a long day on Tuesday for us, but we were happy to hear that she does not need another biopsy done unless something looks suspicious in her blood. Natalie will go in for monthly blood draws for a couple of months, then it will change to once every other month, then once every 4 months, then once every six months. After 5 years, she will be considered cured and will only have to go in annually for a check up.
We've been really busy trying to transition. I didn't know how hard it was until we lost the support of the hospital staff. It took Natalie a while to finally get the hang of taking medicine orally again. Then, there is the boredom issue. Natalie is still recovering at home so she can't really go out and be around other kids. As a result, she is going stir crazy at home. She looks out the window and wants to be part of the real world again. She wants to have sleepovers, playdates, swim, and go inside a store full of people. When she realizes she can't yet, she gets sad and mad. She is learning to be patient and I am learning that lesson as well.
We've been going back and forth on the decision to rent out our condo and rent a house with a yard so that the kids can have a yard to play while Natalie is recovering this summer. I just feel so bad that both Sean and Natalie are cooped up inside all day because Natalie can't be around people. It takes so much effort to search for a place, find somebody to rent our place, and move. We are just praying that the right place opens up for us if we are meant to move.
Grant and I are both trying to take better care of ourselves as well. We've both have gained a little weight from sitting day after day in a hospital room. We've been doing WiiFit at home when we can. I also enrolled in Yogaworks in Walnut Creek through my job. That place is amazing. It looks, feels, and smells like a spa that I just want to spend the whole day there doing yoga and read a good book by the bay window in between yoga classes. Of course, that will never happen with my busy schedule.
That was crazy wishful thinking until I actually took a yoga class last Friday with my co-worker. That was when I realized how hard yoga really is and how out of shape I am. My co-worker, who runs and is in great shape, thought that it would be relaxing and fun. She didn't really think we were going to even break a sweat. My view of yoga is that is suppose to be a class to meditate and relax as well. We were both wrong. Sweat was pouring out of both of us during the middle of class. We both realize it's going to be a challenge, but it will be a great workout as well when we get better at it.
Natalie was playing on Webkinz today and she was happy that she knew all the answers to the medical trivia on there like:
1. Which cell is bigger? A white blood cell or red blood cell?
2. What is the function of the red blood cells?
It's good to know that she got some education during her hospital stay!
Natalie's energy level has also grown. She has been running up and down the stairs at home, riding her scooter outside, and doing art.
We hope her hemoglobin is way up from last Monday. We suspect it is from the way Natalie is acting, but will not get a formal confirmation until her blood draw next week.
The biopsy from last Tuesday is also good. It was a long day on Tuesday for us, but we were happy to hear that she does not need another biopsy done unless something looks suspicious in her blood. Natalie will go in for monthly blood draws for a couple of months, then it will change to once every other month, then once every 4 months, then once every six months. After 5 years, she will be considered cured and will only have to go in annually for a check up.
We've been really busy trying to transition. I didn't know how hard it was until we lost the support of the hospital staff. It took Natalie a while to finally get the hang of taking medicine orally again. Then, there is the boredom issue. Natalie is still recovering at home so she can't really go out and be around other kids. As a result, she is going stir crazy at home. She looks out the window and wants to be part of the real world again. She wants to have sleepovers, playdates, swim, and go inside a store full of people. When she realizes she can't yet, she gets sad and mad. She is learning to be patient and I am learning that lesson as well.
We've been going back and forth on the decision to rent out our condo and rent a house with a yard so that the kids can have a yard to play while Natalie is recovering this summer. I just feel so bad that both Sean and Natalie are cooped up inside all day because Natalie can't be around people. It takes so much effort to search for a place, find somebody to rent our place, and move. We are just praying that the right place opens up for us if we are meant to move.
Grant and I are both trying to take better care of ourselves as well. We've both have gained a little weight from sitting day after day in a hospital room. We've been doing WiiFit at home when we can. I also enrolled in Yogaworks in Walnut Creek through my job. That place is amazing. It looks, feels, and smells like a spa that I just want to spend the whole day there doing yoga and read a good book by the bay window in between yoga classes. Of course, that will never happen with my busy schedule.
That was crazy wishful thinking until I actually took a yoga class last Friday with my co-worker. That was when I realized how hard yoga really is and how out of shape I am. My co-worker, who runs and is in great shape, thought that it would be relaxing and fun. She didn't really think we were going to even break a sweat. My view of yoga is that is suppose to be a class to meditate and relax as well. We were both wrong. Sweat was pouring out of both of us during the middle of class. We both realize it's going to be a challenge, but it will be a great workout as well when we get better at it.
Natalie was playing on Webkinz today and she was happy that she knew all the answers to the medical trivia on there like:
1. Which cell is bigger? A white blood cell or red blood cell?
2. What is the function of the red blood cells?
It's good to know that she got some education during her hospital stay!
Monday, June 8, 2009
Monday Update
We had a fun weekend with the kids. Sean got a new bike so we've been taking him out to ride it every day. We took Natalie to a gigantic art supply store in San Francisco. It was a dream trip for her and she had a lot of fun looking through all the stuff on all 3 floors. We were very careful to keep her away from people. Thank goodness the store was not crowded so it was easy to do that.
Natalie's platelets are going up. They were at 39,000 last Wednesday and they are at 133,000 from today's blood draw. Her ANC is also up from 1,240 to 2,400. We are so happy to see her marrow recovering. The only thing that is trailing is her hemoglobin. They are stable, but not going up. We need prayers for her body to start making some more hemoglobin.
Natalie is doing so much better with the blood draws. She has grown so much from the first time she got poked with a needle. She still says she is scared, but she is less anxious and takes the pokes really well. It also helps that the nurse who does the draw is really good.
Her doctor today said it will probably take 3 months for her body to fully recover. I guess that will be what Natalie will be doing this summer-recovering. We need to figure out how to make it fun for Natalie. We don't want her to be exposed to too much germs, but at same time want her to have some fun.
Grant and I are taking Natalie to UCSF tomorrow for a bone marrow biopsy. That is done every time Natalie finishes a round of chemo. Please pray for that to go well.
Natalie's platelets are going up. They were at 39,000 last Wednesday and they are at 133,000 from today's blood draw. Her ANC is also up from 1,240 to 2,400. We are so happy to see her marrow recovering. The only thing that is trailing is her hemoglobin. They are stable, but not going up. We need prayers for her body to start making some more hemoglobin.
Natalie is doing so much better with the blood draws. She has grown so much from the first time she got poked with a needle. She still says she is scared, but she is less anxious and takes the pokes really well. It also helps that the nurse who does the draw is really good.
Her doctor today said it will probably take 3 months for her body to fully recover. I guess that will be what Natalie will be doing this summer-recovering. We need to figure out how to make it fun for Natalie. We don't want her to be exposed to too much germs, but at same time want her to have some fun.
Grant and I are taking Natalie to UCSF tomorrow for a bone marrow biopsy. That is done every time Natalie finishes a round of chemo. Please pray for that to go well.
Tuesday, June 2, 2009
In Transition
We've been busy trying to be nurse Natalie back to full recovery. We are so happy that she is home, but the reality is that her body has not fully recovered from the last round. They let us go home because her ANC counts jumped so high, but we are still waiting and praying for her bone marrow to produce again, specifically some platelets. We are also trying to put some weight on Natalie.
It is so hard for me to see her so scrawny. One of the doctors said to me that he is certain that she is malnourished because of all the problems we had with the feeding tube and her tummy this last round. We've been cooking anything that she requests even if she only takes a few bites and pushes the rest away. She eats like a bird and nibbles throughout the day- pieces of string cheese, fruit, bacon, etc.
She's been asking to go shopping almost every day, but we are going to wait until her body has fully recovered before we expose her to any germs out there.
Natalie had to get a blood draw yesterday to monitor her platelets. We waited until Sunday night to drop the news that she will have to get poked because she no longer has a pick line. Surprisingly, she took it well. She also did really well with the poke. The nurse only had to do one poke and did not bruise her at all. She kept the IV in so that she does not have to get poked again tomorrow when they will do another blood draw to get an update on her platelets.
Please pray that her body starts producing platelets again. Her ANC looks good, but we are hoping that she does not need any more platelet transfusions.
Natalie will also need to have a bone marrow biopsy done next Tuesday so they can see how her marrow is doing after 5 rounds of chemo. Please pray for that to go well too.
It is so hard for me to see her so scrawny. One of the doctors said to me that he is certain that she is malnourished because of all the problems we had with the feeding tube and her tummy this last round. We've been cooking anything that she requests even if she only takes a few bites and pushes the rest away. She eats like a bird and nibbles throughout the day- pieces of string cheese, fruit, bacon, etc.
She's been asking to go shopping almost every day, but we are going to wait until her body has fully recovered before we expose her to any germs out there.
Natalie had to get a blood draw yesterday to monitor her platelets. We waited until Sunday night to drop the news that she will have to get poked because she no longer has a pick line. Surprisingly, she took it well. She also did really well with the poke. The nurse only had to do one poke and did not bruise her at all. She kept the IV in so that she does not have to get poked again tomorrow when they will do another blood draw to get an update on her platelets.
Please pray that her body starts producing platelets again. Her ANC looks good, but we are hoping that she does not need any more platelet transfusions.
Natalie will also need to have a bone marrow biopsy done next Tuesday so they can see how her marrow is doing after 5 rounds of chemo. Please pray for that to go well too.
Friday, May 29, 2009
We're Really Home For Good!
What a day! We were told yesterday that Friday is out for going home since counts dropped and then this morning everything changed again. It's the story of our life- unpredictable, surprises at every corner, and emotional. Got up at 9:00 am and the first question on my mind was what Natalie's ANC is. The nurse smiles and says, "It's at 1,240."
"Are you serious?" I leap out of bed so surprised at the huge jump in numbers.
"Does that mean we can go home?"
Natalie is still asleep and upset that we are stirring her from her sweet slumber. She doesn't want to go home and doesn't want to talk about it because of the huge ordeal with taking a big, stinky pill last night. Since they are trying to transition Natalie from IV antibiotics to oral, she had to begin taking her antibiotic by mouth last night. What a fight that was. She had the biggest fit ever because the pill smells like poo poo to her. She doesn't want to go home if it means taking the poo poo pill by mouth. She finally choked it down after much tears last night.
The doctors confirm what I want to hear this morning- We can go home! They don't know how Natalie made her counts jump so high, but counts are so high that they feel good with discharging her. The bad news is that on top of taking the antibiotic orally, they want to take the pick line out before she goes home.
My emotions are all over the map. I'm too tired to battle with Natalie over the pill and I definitely do not want to even let her know about the pick line removal. I call Grant to pass on the good news and ask him to come immediately for support because Natalie is having a big fit about going home because of the pill. They wanted her to take the pill again this morning. I spot Eileen, Natalie's child life specialist by the door. I've never been so happy to see Eileen. She's trained to talk to kids when they are anxious about procedures and she has a great relationship with Natalie. I send her to Natalie's room as I email everybody the confirmation that we are going home.
When I get back to Natalie's room, she is happy as a clam. She's laughing and talking with Eileen. Eileen has worked her magic. She understands that Natalie is overwhelmed and she is so patient with her.
Good news-they can change the pill to liquid form and just push it through a syringe through Natalie's NG tube. She can keep the tube in until June 9. Only 3 more days of the stinky antibiotic and Natalie does not have to deal with swallowing it after all.
The next battle is letting know her pick line needs to come out. Of course, she is not happy. The nurses and doctors are extremely patient with her and wait the entire 2 1/2 hours for Natalie to remove the tape dressing from her pick line. It took 2 minutes to remove the line after Natalie took 2 1/2 hours to remove the dressing herself.
At 3 pm, we are ready to go. There's a gathering, banner, clapping, and some tears. Natalie and I can't cry. We are so overwhelmed and shocked. We can't believe this is really happening. My body is in some state of emotional shock. Why can't I cry? I normally cry so easily at anything. Is it because I've cried almost every day for the last 6 months that the well broke? The nurses are crying and Grant is crying. I'm just so happy to go home, but I can't cry. I am worried that something is wrong with me.
We get home and Natale is so happy to see the beautiful banner and balloons for her in front of our house. She is happy to see more beautiful decorations in our house and her room. It's perfect and exactly what we wanted.
We eat, and the kids watch a movie. I fall asleep for 2 hours. When I wake up, my emotions kick in. I am crying now as I type this. What a relief to know that the well is working again.
We are so happy to be home and done with Natalie's treatment. I am so happy to see Natalie and Sean playing together again. We are so happy to have wonderful friend and family. We love you all.
We'll continue to keep this blog up until Natalie's considered cured in five years. Thank you all who have supported us on our scary journey. We move on to transitioning Natalie back to normal life and clinic visits. We hope bigger and better things are in store for us around the corner.
"Are you serious?" I leap out of bed so surprised at the huge jump in numbers.
"Does that mean we can go home?"
Natalie is still asleep and upset that we are stirring her from her sweet slumber. She doesn't want to go home and doesn't want to talk about it because of the huge ordeal with taking a big, stinky pill last night. Since they are trying to transition Natalie from IV antibiotics to oral, she had to begin taking her antibiotic by mouth last night. What a fight that was. She had the biggest fit ever because the pill smells like poo poo to her. She doesn't want to go home if it means taking the poo poo pill by mouth. She finally choked it down after much tears last night.
The doctors confirm what I want to hear this morning- We can go home! They don't know how Natalie made her counts jump so high, but counts are so high that they feel good with discharging her. The bad news is that on top of taking the antibiotic orally, they want to take the pick line out before she goes home.
My emotions are all over the map. I'm too tired to battle with Natalie over the pill and I definitely do not want to even let her know about the pick line removal. I call Grant to pass on the good news and ask him to come immediately for support because Natalie is having a big fit about going home because of the pill. They wanted her to take the pill again this morning. I spot Eileen, Natalie's child life specialist by the door. I've never been so happy to see Eileen. She's trained to talk to kids when they are anxious about procedures and she has a great relationship with Natalie. I send her to Natalie's room as I email everybody the confirmation that we are going home.
When I get back to Natalie's room, she is happy as a clam. She's laughing and talking with Eileen. Eileen has worked her magic. She understands that Natalie is overwhelmed and she is so patient with her.
Good news-they can change the pill to liquid form and just push it through a syringe through Natalie's NG tube. She can keep the tube in until June 9. Only 3 more days of the stinky antibiotic and Natalie does not have to deal with swallowing it after all.
The next battle is letting know her pick line needs to come out. Of course, she is not happy. The nurses and doctors are extremely patient with her and wait the entire 2 1/2 hours for Natalie to remove the tape dressing from her pick line. It took 2 minutes to remove the line after Natalie took 2 1/2 hours to remove the dressing herself.
At 3 pm, we are ready to go. There's a gathering, banner, clapping, and some tears. Natalie and I can't cry. We are so overwhelmed and shocked. We can't believe this is really happening. My body is in some state of emotional shock. Why can't I cry? I normally cry so easily at anything. Is it because I've cried almost every day for the last 6 months that the well broke? The nurses are crying and Grant is crying. I'm just so happy to go home, but I can't cry. I am worried that something is wrong with me.
We get home and Natale is so happy to see the beautiful banner and balloons for her in front of our house. She is happy to see more beautiful decorations in our house and her room. It's perfect and exactly what we wanted.
We eat, and the kids watch a movie. I fall asleep for 2 hours. When I wake up, my emotions kick in. I am crying now as I type this. What a relief to know that the well is working again.
We are so happy to be home and done with Natalie's treatment. I am so happy to see Natalie and Sean playing together again. We are so happy to have wonderful friend and family. We love you all.
We'll continue to keep this blog up until Natalie's considered cured in five years. Thank you all who have supported us on our scary journey. We move on to transitioning Natalie back to normal life and clinic visits. We hope bigger and better things are in store for us around the corner.
Thursday, May 28, 2009
Just a Couple More Days
Natalie's counts dropped a little today to 470, so they want to keep her here to make sure it stabilizes before discharging her. This is typical for Natalie- her trend is to go up and down. They said MAYBE Saturday before we can go home. Nothing is predictable with the counts. All we know is that we have learned to go with the flow of things and that it is impossible to plan anything in this situation. It's still good news for us if we go home in a couple of days. We're just so happy that Natalie is doing better.
We don't really want anything big for Natalie when she does go home. We're thinking balloons, a banner, and a cake with our immediate family just to celebrate this milestone. We'll plan a big celebration for her down the road when she is ready to handle the crowd and has a hearty appetite to eat. All of you who have shared this journey with us will definitely be invited.
We don't really want anything big for Natalie when she does go home. We're thinking balloons, a banner, and a cake with our immediate family just to celebrate this milestone. We'll plan a big celebration for her down the road when she is ready to handle the crowd and has a hearty appetite to eat. All of you who have shared this journey with us will definitely be invited.
So Happy Can't Sleep
Natalie's counts jumped up to 530 today! We are so happy and amazed. Sorry that I wasn't able to share the good news with all of you earlier. The internet connection in our hospital room is really bad so I was only able to quickly send out an email to a list of people that are in my blackberry.
The doctors said we should plan to go home this Friday. Yes, in two days. Can you believe it? I am beyond happy just thinking about all the things Natalie can do again and having our family back together under one roof after months of enduring through so much.
We were just in ICU last week, and then the pneumonia ordeal. We were told to expect to stay at the hospital for a couple of weeks after getting out of ICU. I am still in shock that we may be able to go home on Friday.
I never got to share with all of you how scary it was when Natalie went down to ICU. It was the scariest experience in my entire life as the ICU doctors were pacing anxiously back and forth staring intensely at the numbers on her vitals tracking monitor, and then making a quick decision to operate and take out her broviac line. I never felt so helpless or experienced so much distress as I waited outside the room during the procedure. Then, after the procedure, being told that the next 12 hours are critical for Natalie. "She could get better or get way worse," was what we were told after the broviac line came out. She couldn't eat anything for two days because they wanted to be able to intervene if her condition got worse. It was nerve wrecking as her numbers did not jump as high as they wanted them to the following day and thinking that any moment something scarier could happen.
So going from the depths of despair to incredible news is so surreal to us right now. We will probably cry on Friday. They will be different tears from the tears that were shed when Natalie was in ICU, but we will probably be a teary mess just the same.
The doctors said we should plan to go home this Friday. Yes, in two days. Can you believe it? I am beyond happy just thinking about all the things Natalie can do again and having our family back together under one roof after months of enduring through so much.
We were just in ICU last week, and then the pneumonia ordeal. We were told to expect to stay at the hospital for a couple of weeks after getting out of ICU. I am still in shock that we may be able to go home on Friday.
I never got to share with all of you how scary it was when Natalie went down to ICU. It was the scariest experience in my entire life as the ICU doctors were pacing anxiously back and forth staring intensely at the numbers on her vitals tracking monitor, and then making a quick decision to operate and take out her broviac line. I never felt so helpless or experienced so much distress as I waited outside the room during the procedure. Then, after the procedure, being told that the next 12 hours are critical for Natalie. "She could get better or get way worse," was what we were told after the broviac line came out. She couldn't eat anything for two days because they wanted to be able to intervene if her condition got worse. It was nerve wrecking as her numbers did not jump as high as they wanted them to the following day and thinking that any moment something scarier could happen.
So going from the depths of despair to incredible news is so surreal to us right now. We will probably cry on Friday. They will be different tears from the tears that were shed when Natalie was in ICU, but we will probably be a teary mess just the same.
Tuesday, May 26, 2009
Counts Are Up
Guess what? Natalie's counts jumped up to 80 this weekend and then up to 160 today! They said that if she continues going up, it is possible that she may be able to go home next week. As Sean would say, "forever and ever." The thought of being completely done with this is so unbelievable to us. I am sure we will cry as much as we will celebrate with all of you.
Of course, Natalie's trend is that she has a tendency to go down a little and then bounce up again for a bit. We are hoping it doesn't go down too much and bounces up really high.
Of course, Natalie's trend is that she has a tendency to go down a little and then bounce up again for a bit. We are hoping it doesn't go down too much and bounces up really high.
Sunday, May 24, 2009
Standing Up and Holding On
This has probably been one of the toughest weeks for us. We're relying on so many for help to get us through. Never thought we would also be relying on Beyonce and Avril Lavigne to help get us through too. I'm talking about their music of course. A couple of months ago, my friend Margo gave me a cd she put together of songs to help in the crazy journey we are on. On the cd is "Just Stand Up" and "Keep Holding On". Both great songs that are fitting for our circumstances. Natalie loves the cd too.
I just listened to the songs this morning again and they made me cry. Thankfully, nobody came in.
I am reminded that we can get through this and we are stronger than we think.
The good news is that Natalie has not had a fever since Friday night. She has also been pretty active. She wanted Sean and her Po Po to visit yesterday and she also wanted to take a shower. Both good signs that she is feeling better. They took her off one of the antibiotics today and said if she continues to do better, they will start taking more off. She is on so many right now. They are what the medical team refer to as "the big guns".
The challenging thing is that her nose feeding tube got clogged yesterday. They tried squirting cola into it as well as put the guide wire through it to unclog it. No luck. One of the doctors want it out today for fear it may cause an infection. Grant just called to say hold off because he has an idea how to unclog it. We'll see... The nurses said that as long as she eats, she doesn't need it. Natalie ate half a hotdog and some cheese crackers yesterday. She asked for a Costco hotdog and smoothie today. Robin, the only nurse that Natalie will let put a nose tube down her, is not here today unfortunately. It's her daughter's birthday.
Also, with all the events of this week, everyone forgot that the gauze that is on the site of where they removed her broviac should've been removed days ago. The rule here is that a bandage can't stay on longer than 24 hours because of possible bacteria infection. So,last night it took us almost over 1 1/2 hours to get Natalie to remove the gauze so the doctors could take a look at the site. She was crying and wanted her papa. We finally got it off. Actually, Natalie got if off because she wouldn't let anyone do it. The site looks really good. Jenny, the nurse, was going to put a sad face band-aid on it. Natalie stopped her and said, "I want a happy face band-aid." She's such a funny girl. I'm glad she wants her papa though because he is spending the night tonight and she will have to remove the happy face band-aid tonight to let it air again. She has to do this every night until the site completely heals.
We need everybody to please pray for Natalie's counts to start going way up! We've been told that once her counts come, she will be less prone to getting another infection and be able to recover from her pneumonia easier too. The good thing is that her strep seems to be gone. The pneumonia is also really small and in one lobe of her lungs only right now. They think it's the same bacteria that was in her blood that caused the pneumonia.
That's it for now. Here are some of the lyrics for the two songs I mentioned ealier.
"Just Stand Up"- Beyonce
"Everything'll be alright again
alright again, alright again
The heart is stronger than you think
LIke it could go through anything
And even when you think it can't
It finds a way to still push on through
Sometimes you wanna run away
Ain't got the patience for the pain
And if you don't believe it look into your heart
The beat goes on
I'm telling you things get better through whatever
If you fall, dust if off, don't let up
Don't you know you can be your own miracle
You need to know
If the mind keeps thinking you've had enough
But the heart keeps telling you don't give up
Who are we to be questioning, wondering what is what
Don't give up, through it all, just stand up.
It's like we all had better days
Problems getting all up in your face
Just because you go through it
Don't mean it gotta take control, no
If the mind keeps thinking you've had enough
But the heart keeps telling you don't give up
Who are we to be questioning, wondering what is what
Don't give up, through it all, just stand up.
"Keep Holding On"-Avril Lavigne
You're not alone, together we stand
I'll be by your side, you know I'll take your hand
When it gets cold and it feels like the end
There's no place to go, you know I won't give in
No I won't give in
Keep holding on
'Cause you know we'll make it through, we'll make it through
Just stay strong
'Cause you know I'm here for you, I'm here for you
I just listened to the songs this morning again and they made me cry. Thankfully, nobody came in.
I am reminded that we can get through this and we are stronger than we think.
The good news is that Natalie has not had a fever since Friday night. She has also been pretty active. She wanted Sean and her Po Po to visit yesterday and she also wanted to take a shower. Both good signs that she is feeling better. They took her off one of the antibiotics today and said if she continues to do better, they will start taking more off. She is on so many right now. They are what the medical team refer to as "the big guns".
The challenging thing is that her nose feeding tube got clogged yesterday. They tried squirting cola into it as well as put the guide wire through it to unclog it. No luck. One of the doctors want it out today for fear it may cause an infection. Grant just called to say hold off because he has an idea how to unclog it. We'll see... The nurses said that as long as she eats, she doesn't need it. Natalie ate half a hotdog and some cheese crackers yesterday. She asked for a Costco hotdog and smoothie today. Robin, the only nurse that Natalie will let put a nose tube down her, is not here today unfortunately. It's her daughter's birthday.
Also, with all the events of this week, everyone forgot that the gauze that is on the site of where they removed her broviac should've been removed days ago. The rule here is that a bandage can't stay on longer than 24 hours because of possible bacteria infection. So,last night it took us almost over 1 1/2 hours to get Natalie to remove the gauze so the doctors could take a look at the site. She was crying and wanted her papa. We finally got it off. Actually, Natalie got if off because she wouldn't let anyone do it. The site looks really good. Jenny, the nurse, was going to put a sad face band-aid on it. Natalie stopped her and said, "I want a happy face band-aid." She's such a funny girl. I'm glad she wants her papa though because he is spending the night tonight and she will have to remove the happy face band-aid tonight to let it air again. She has to do this every night until the site completely heals.
We need everybody to please pray for Natalie's counts to start going way up! We've been told that once her counts come, she will be less prone to getting another infection and be able to recover from her pneumonia easier too. The good thing is that her strep seems to be gone. The pneumonia is also really small and in one lobe of her lungs only right now. They think it's the same bacteria that was in her blood that caused the pneumonia.
That's it for now. Here are some of the lyrics for the two songs I mentioned ealier.
"Just Stand Up"- Beyonce
"Everything'll be alright again
alright again, alright again
The heart is stronger than you think
LIke it could go through anything
And even when you think it can't
It finds a way to still push on through
Sometimes you wanna run away
Ain't got the patience for the pain
And if you don't believe it look into your heart
The beat goes on
I'm telling you things get better through whatever
If you fall, dust if off, don't let up
Don't you know you can be your own miracle
You need to know
If the mind keeps thinking you've had enough
But the heart keeps telling you don't give up
Who are we to be questioning, wondering what is what
Don't give up, through it all, just stand up.
It's like we all had better days
Problems getting all up in your face
Just because you go through it
Don't mean it gotta take control, no
If the mind keeps thinking you've had enough
But the heart keeps telling you don't give up
Who are we to be questioning, wondering what is what
Don't give up, through it all, just stand up.
"Keep Holding On"-Avril Lavigne
You're not alone, together we stand
I'll be by your side, you know I'll take your hand
When it gets cold and it feels like the end
There's no place to go, you know I won't give in
No I won't give in
Keep holding on
'Cause you know we'll make it through, we'll make it through
Just stay strong
'Cause you know I'm here for you, I'm here for you
Friday, May 22, 2009
Doctor Just Came In
and the results of her scan shows Natalie has pneumonia. Please pray hard for Natalie again and for us that we can overcome this. We are so tired.
Thursday, May 21, 2009
Roller Coaster
We seem to be on a roller coaster these days with Natalie's health. We experienced a scary plunge on Sunday when she had to go down to ICU, then rose up to a beautiful height Tuesday when we got out of ICU. We've had dips the past few days. She still has a fever that she can't seem to shake. She'll be okay during the entire day, and then get a fever at night. They did a CAT scan on her today and the doctors are looking over the results this very moment as I am typing this. We are hoping that there is nothing serious going on with Natalie and that she can get over these dips and her stomach problems.
Natalie said to me today, "Just a couple more weeks and we'll be done with this mommy."
She has the sweetest voice that melts my heart.
I want to be done with this today. I want to see Natalie laugh, play, and create art. I want to see her run with her little brother and her friends. I want to see her run into our room like she's done almost every morning for years, and jump into our bed. I want to cook with her. I want to go to the Hello Kitty store with her and watch her rummage through every item in that store trying to figure out how to best spend the $5.00 she just got from the tooth fairy.
Natalie has been sleeping a lot the past two days. She gets up for a couple of hours though to laugh, talk, and play. Yesterday, she painted some butterflies from the stained art book that Art and Terry Wise gave her. Today, she played bingo. We also did the "Decoding the Color Mystery" science experiment from the science kit that Grant gave her. She is not listless. She is just trying to get through her tummy pain by sleeping.
We are hanging in there as best we can and hoping that we can come up from this dip soon.
Natalie said to me today, "Just a couple more weeks and we'll be done with this mommy."
She has the sweetest voice that melts my heart.
I want to be done with this today. I want to see Natalie laugh, play, and create art. I want to see her run with her little brother and her friends. I want to see her run into our room like she's done almost every morning for years, and jump into our bed. I want to cook with her. I want to go to the Hello Kitty store with her and watch her rummage through every item in that store trying to figure out how to best spend the $5.00 she just got from the tooth fairy.
Natalie has been sleeping a lot the past two days. She gets up for a couple of hours though to laugh, talk, and play. Yesterday, she painted some butterflies from the stained art book that Art and Terry Wise gave her. Today, she played bingo. We also did the "Decoding the Color Mystery" science experiment from the science kit that Grant gave her. She is not listless. She is just trying to get through her tummy pain by sleeping.
We are hanging in there as best we can and hoping that we can come up from this dip soon.
Wednesday, May 20, 2009
We're Out of ICU!
They let us out of ICU last night so we are back on the 7th Floor. We're so happy! Natalie's blood pressure is looking good. Natalie and I both slept through the night last night. We were so tired. We had an incredible nurse last night. Her name is My. She is one of Natalie's favorite nurses and she got to all the beeps on the machines before they woke us up. She's pretty incredible because I didn't hear one beep at all last night.
Natalie is pretty tired and overwhelmed from the whole ICU experience. Her stomach is bothering her still so we are hoping that the antacid they give her will resolve that today.
Natalie is pretty tired and overwhelmed from the whole ICU experience. Her stomach is bothering her still so we are hoping that the antacid they give her will resolve that today.
Tuesday, May 19, 2009
Hoping To Get Out of ICU Today
We have a very nice nurse today in ICU. She is very positive and hopeful that Natalie may be able to get out of ICU today. She is the nicest nurse we've had since Natalie has been down here.
The ICU and the team here is so different from 7Long. They are trained to respond immediately to emergency situations so they don't tolerate any negotiations with Natalie. On Sunday, when Natalie asked if she could wait a little on the IV poke, the ICU doctor said to the nurses on 7Long "You let her negotiate?" One of the nurses said, "Yes, because it helps her feel better." They know Natalie so well up there on 7Long. They know that she doesn't like the procedures and pain that comes with her treatment, but she will ultimately cooperate if you give her a little control. Some things are not up for discussion, but the things that she can control (when she wants to take her medicine, who does she want to do the procedure, who she wants to be her nurse for the day, etc.) they let her decide. When Natalie had to come down to ICU, most of the nurses were heartbroken and felt as distressed as we did. It's great how they have become so much a part of our family through the past months and how much they love Natalie.
In ICU today, they took Natalie off of docamine (the medicine they were using to help get her blood pressure up)in hopes to see her body manage to maintain a good blood pressure on its own. They want to see her blood pressure above 85/50. They also started giving her some nutrition through her nose tube today after two days of not letting her eat anything. They gave her some blood as well and have scheduled a dentist to come out to check the cavity she has to make sure that is not another source of infection besides the strep that has been confirmed.
We appreciate all of you who have been praying for Natalie and those who have stayed up the past few nights praying for Natalie. Please continue to pray that she recovers from this infection and that we can leave ICU.
The ICU and the team here is so different from 7Long. They are trained to respond immediately to emergency situations so they don't tolerate any negotiations with Natalie. On Sunday, when Natalie asked if she could wait a little on the IV poke, the ICU doctor said to the nurses on 7Long "You let her negotiate?" One of the nurses said, "Yes, because it helps her feel better." They know Natalie so well up there on 7Long. They know that she doesn't like the procedures and pain that comes with her treatment, but she will ultimately cooperate if you give her a little control. Some things are not up for discussion, but the things that she can control (when she wants to take her medicine, who does she want to do the procedure, who she wants to be her nurse for the day, etc.) they let her decide. When Natalie had to come down to ICU, most of the nurses were heartbroken and felt as distressed as we did. It's great how they have become so much a part of our family through the past months and how much they love Natalie.
In ICU today, they took Natalie off of docamine (the medicine they were using to help get her blood pressure up)in hopes to see her body manage to maintain a good blood pressure on its own. They want to see her blood pressure above 85/50. They also started giving her some nutrition through her nose tube today after two days of not letting her eat anything. They gave her some blood as well and have scheduled a dentist to come out to check the cavity she has to make sure that is not another source of infection besides the strep that has been confirmed.
We appreciate all of you who have been praying for Natalie and those who have stayed up the past few nights praying for Natalie. Please continue to pray that she recovers from this infection and that we can leave ICU.
Monday, May 18, 2009
Infection and ICU
We had one of the most scariest days yesterday since Natalie's treatment. Natalie got a strep infection and had to be moved to the Intensive Care Unit Sunday night because her blood pressure was low all day. They said her body was in shock because of the overwhelming infection and her low counts. They removed her broviac line last night after not being able to get her blood pressure to go up in ICU. They suspect that might be the source of infection and wanted it out immediately. They also inserted a pick line in her for medicine. It was a hard night for us until all the procedures were done. Natalie was so brave through it all though. The night was good for her as her blood pressure seemed stabilized. Of course, she had so many people praying for her that night as well. She was doing so well that they thought she might be able to get out of ICU.
However, this morning, her blood pressure dropped again and they haven't been able to stablize it all day. We are concerned and need as many prayers as we can to get Natalie and us through this. Please pray for us and for Natalie to recover by tomorrow morning so she can go back to 7Long.
However, this morning, her blood pressure dropped again and they haven't been able to stablize it all day. We are concerned and need as many prayers as we can to get Natalie and us through this. Please pray for us and for Natalie to recover by tomorrow morning so she can go back to 7Long.
Sunday, May 17, 2009
Fever
Natalie woke up with a fever of 103 this morning. We've been here before, but it still does not make it any easier. Please pray that it is not a serious infection and that the antibiotics they started on her will get whatever she has.
Wednesday, May 13, 2009
Tummy Trouble
Natalie's counts are low and she is having a hard time tolerating the liquid boost that they normally feed her with. She has vomited at least 3 times in the last two days from the nutritional boost. All three times, her nose/feeding tube came up, but Natalie managed to put it back down her tummy all by herself. The nurses and doctors were really impressed with that. I am not sure how she did today. When I called the hospital, Natalie was asleep and I didn't want to wake her up with too much talking. Grant's parents are with her tonight. They have spent the night with her practically every other night since they've been here. Natalie is sad on the nights they are not with her because she loves doing art and playing with them. They leave on Monday so we are tryig to let her spend as much time as she can with them. We are also trying to get some rest, although both our jobs have been pretty busy.
Just want to put it out there for prayers for Natalie's tummy to be able to tolerate the feeds, or that she regains her appetite so she doesn't have to deal with the feeds. She's been able to take the boost the last 4 rounds, but her body has also been hit so hard with chemo that everything seems harder this round.
Just want to put it out there for prayers for Natalie's tummy to be able to tolerate the feeds, or that she regains her appetite so she doesn't have to deal with the feeds. She's been able to take the boost the last 4 rounds, but her body has also been hit so hard with chemo that everything seems harder this round.
Thursday, May 7, 2009
Done With Chemo
We went back to the hospital on Tuesday to continue Natalie's last round of chemo treatment. Today was her last chemo infusion.
Now, we go through a couple of weeks where it gets scary as her counts hit zero again. This is really the part we hate- the blood transfusions, no immunity, and low energy. Natalie's marrow is really tired from all the chemo hits so we've been told that she is not going to bounce back as quickly as her first few rounds.
We are asking for specific prayers for her body to recover quickly and for her little body to be protected from illnesses and infections. Please also pray for us to not get sick either.
Everyone here is trying to help Natalie get through her last round in good spirits. One of the nurses brought in an Easy Bake Oven so Natalie can bake while she is recovering. Another nurse is trying to think of a new craft project for Natalie to do that will keep her entertained. We are all basically trying to think of new things for Natalie to do since she's done practically every arts and crafts project possible.
We are also trying to limit visitors though for this last round because of all the different sicknesses that are out there right now- swine flu, strep, etc. If people would like to write and send her letters/cards, we feel great about that. It would be great for Natalie to finish off her last round of chemo with lots of love. You can send letters directly to the hospital. We are in Room L731.
Love,
The Nakatanis
Now, we go through a couple of weeks where it gets scary as her counts hit zero again. This is really the part we hate- the blood transfusions, no immunity, and low energy. Natalie's marrow is really tired from all the chemo hits so we've been told that she is not going to bounce back as quickly as her first few rounds.
We are asking for specific prayers for her body to recover quickly and for her little body to be protected from illnesses and infections. Please also pray for us to not get sick either.
Everyone here is trying to help Natalie get through her last round in good spirits. One of the nurses brought in an Easy Bake Oven so Natalie can bake while she is recovering. Another nurse is trying to think of a new craft project for Natalie to do that will keep her entertained. We are all basically trying to think of new things for Natalie to do since she's done practically every arts and crafts project possible.
We are also trying to limit visitors though for this last round because of all the different sicknesses that are out there right now- swine flu, strep, etc. If people would like to write and send her letters/cards, we feel great about that. It would be great for Natalie to finish off her last round of chemo with lots of love. You can send letters directly to the hospital. We are in Room L731.
Love,
The Nakatanis
Friday, May 1, 2009
Rest
We are home for a couple of days to rest before we continue two more days of chemo. It's been a crazy couple of days for us since Tuesday. Natalie started chemo at 11pm on Tuesday and ended 11 am on Thursday. She didn't eat or drink anything for two days once the medicine started. It was a little scary to see her go from energetic and bubbly to being lethargic. She just wanted to sleep all the time and didn't really want to talk.
She got her shot at 5 pm last night and did really well with it. We definitely have to give a star to Nurse Jane who gave her the shot. She was so quick and good. She was so fast that Natalie did't even have a chance to feel the shot and cry. We numbed her thigh area right before with some ice.
We got home at 7:30 pm and Natalie started having an appetite again at 8:30 pm. It's strange how a change in environment turns her around. She wanted waffles with pure maple syrup for dinner and a glass of milk. Sean and her watched a Pokemon movie together. He was making her smile and laugh by acting out the various scenes in the movie. Nobody lifts up her spirits as much as Sean does. He is good medicine for her and for us. He is pure joy and sunshine.
Natalie woke up happy this morning. She ate a bowl of Honey Nut Cheerios with milk. We are hoping that she continues to eat and get some good rest before we go back to the hospital on Tuesday to repeat what we just did this past week.
She got her shot at 5 pm last night and did really well with it. We definitely have to give a star to Nurse Jane who gave her the shot. She was so quick and good. She was so fast that Natalie did't even have a chance to feel the shot and cry. We numbed her thigh area right before with some ice.
We got home at 7:30 pm and Natalie started having an appetite again at 8:30 pm. It's strange how a change in environment turns her around. She wanted waffles with pure maple syrup for dinner and a glass of milk. Sean and her watched a Pokemon movie together. He was making her smile and laugh by acting out the various scenes in the movie. Nobody lifts up her spirits as much as Sean does. He is good medicine for her and for us. He is pure joy and sunshine.
Natalie woke up happy this morning. She ate a bowl of Honey Nut Cheerios with milk. We are hoping that she continues to eat and get some good rest before we go back to the hospital on Tuesday to repeat what we just did this past week.
Monday, April 27, 2009
Back to the Hospital Tomorrow
We've had quite an adventurous weekend. We went to the hospital yesterday for a blood draw and dressing change. Then we went to Japantown afterwards to grab some good food and had a picnic in the car. After that, Natalie really wanted to drive across the Golden Gate Bridge home so we did that.
Natalie's ANC is a little over 1300 so we are planning to go back to the hospital tomorrow to start her last round of chemo. Please pray for the biopsy as well as her last chemo treatment to go really well.
As part of her last round of treatment, Natalie needs to get two shots. We finally sat down with her and told her about them because we didn't want her to stress out over it for weeks. Of course, she asked us lots of questions about it--how big is the needle? Is it like getting a flu shot? Does she have a choice where they give the shot? Can she pick the nurse to give the shots to her? We didn't have answers to most of her questions, but she was okay with that. I am sure she will ask the doctors when she is at the hospital tomorrow. She handled it better than we expected. She has grown so much from when she was first admitted to the hospital. I think also because we are getting her a little treat that makes getting the shots more bearable for her.
Natalie's ANC is a little over 1300 so we are planning to go back to the hospital tomorrow to start her last round of chemo. Please pray for the biopsy as well as her last chemo treatment to go really well.
As part of her last round of treatment, Natalie needs to get two shots. We finally sat down with her and told her about them because we didn't want her to stress out over it for weeks. Of course, she asked us lots of questions about it--how big is the needle? Is it like getting a flu shot? Does she have a choice where they give the shot? Can she pick the nurse to give the shots to her? We didn't have answers to most of her questions, but she was okay with that. I am sure she will ask the doctors when she is at the hospital tomorrow. She handled it better than we expected. She has grown so much from when she was first admitted to the hospital. I think also because we are getting her a little treat that makes getting the shots more bearable for her.
Wednesday, April 22, 2009
750
is the number from the blood draw today. Not enough for Natalie to start chemo tomorrow. It's going the right direction, but slowly. We are happy to have more time together. It's looking like next Tuesday that Natalie starts her last round of chemo. Natalie is a little sad because she was looking forward to seeing her friends from the hospital tomorrow. We were also all hoping to be done with treatment by Grant's birthday, May 16. That's probably not likely now. In the big scheme of things, we are happy to be together and to see Natalie with energy.
Tuesday, April 21, 2009
640
We went to UCSF Hospital on Sunday to change the dressing on Natalie's central line. The nurse also drew some blood to see where Natalie's counts are at. As of Sunday her ANC is 640 so we are waiting to do another blood draw Wednesday to see if she will make it to 1,000 to start her last round of chemo this Thursday. If her counts are below 1,000, they will shoot for next Tuesday to start.
This is the longest time that we've been home as a family since Natalie was diagnosed. It's been really nice. We've been spending great time together as a family and the kids have been really happy.
We've noticed that Natalie's bone marrow is taking longer to recover than the previous rounds of chemo. We've been told it's because her bone marrow is really tired from all the chemo, but will eventually recover.
Natalie's appetite is stable. She got sick of fettuccine after eating it day and night for 3 days. She moved on to eating the ham and cheese kid's sandwich at Quiznos for 3 days. Now, she wants waffles and pure maple syrup only. It's strange how she clings on to one thing and eats it until she gets sick of it. She's drinking like a fish again so we are happy about that.
We'll keep you posted on if she starts chemo this week. As always, please pray that she does amazingly well with this round of chemo
This is the longest time that we've been home as a family since Natalie was diagnosed. It's been really nice. We've been spending great time together as a family and the kids have been really happy.
We've noticed that Natalie's bone marrow is taking longer to recover than the previous rounds of chemo. We've been told it's because her bone marrow is really tired from all the chemo, but will eventually recover.
Natalie's appetite is stable. She got sick of fettuccine after eating it day and night for 3 days. She moved on to eating the ham and cheese kid's sandwich at Quiznos for 3 days. Now, she wants waffles and pure maple syrup only. It's strange how she clings on to one thing and eats it until she gets sick of it. She's drinking like a fish again so we are happy about that.
We'll keep you posted on if she starts chemo this week. As always, please pray that she does amazingly well with this round of chemo
Wednesday, April 15, 2009
Fettuccine
Natalie's appetite has improved since Sunday. Fettuccine seems to be the new dish she loves to eat for breakfast, lunch, and dinner. It's high in calories so that's good. She needs the calories. I try to make a fresh batch for her every day. Natalie helps with sprinkling the parmesan cheese in. We also baked a yellow cake from scratch on Monday night. She's been nibbling on that with some milk.
Our Easter
Easter was good. Saturday, Tammy and the kids baked sugar cookies. Then Tammy and I stayed up until about 11pm putting together Easter baskets for them. Tammy and I were going to go to church Sunday, but Natalie has not been her normal self when she is at home. She does not have the appetite she has when her counts are high. Both Tammy and Natalie were worried about leaving Natalie home with just Tammy’s mom not knowing where her counts were at. When we left the hospital, her ANC was 410, but it has a tendency to go up and down. We decided to stay near the kids.
Easter morning, the kids ran downstairs and found their baskets, then ran back upstairs to ask if they could eat candy before breakfast. No, gotta wait. Tammy’s mom made breakfast, then we puttered around before we went to UCSF. Natalie needed her dressing changed on Sunday. When we called the hospital to let them know we were coming in, they said they wanted to draw some blood to see where her counts were at as well as do the dressing change. Natalie and Sean decorated the cookies and we brought them for the nurses. We got into UCSF about 2pm and stayed a couple hours, chatting merrily with Robin as she changed Natalie's dressing. Robin also brought Natalie a slice of ham and another nurse gave her a chocolate cupcake, which Natalie slipped to me. Robin mentioned that she made scalloped potatoes, but they were gone, so we didn't get any. When Robin was out, Natalie said she didn't want them anyway, but after I explained that they were cheesy potatoes, she changed her tune! Natalie wanted to stay at the hospital longer, then we reminded her that we still had the Easter egg hunt at home.
We picked up some Yummy Yummy special fried rice, then Natalie wanted to see the You See Sushi storefront, so we drove back that way. Finally got home about 5pm, then Tammy jumped right into cooking scalloped potatoes. Tammy’s mom made 5 spice chicken, using organic chickens. While the potatoes were browning, we had our Easter egg hunt. Natalie didn't want Sean to get a head start, so we hid a dozen eggs for Natalie in her room and a dozen in Sean's room. We cut them loose and they had a grand time.
Ate dinner, did dishes, gave Sean and Natalie a bath, then put a movie on for the kiddies. What a day! We are so glad that we got to be home together for Easter.
We also found out that night that Natalie’s counts had dropped to 270. Her counts are still low so it’s looking more like we go back to the hospital next Tuesday for her last round of chemo. We are praying that her counts go up. We are enjoying our extended time home as a family.
Easter morning, the kids ran downstairs and found their baskets, then ran back upstairs to ask if they could eat candy before breakfast. No, gotta wait. Tammy’s mom made breakfast, then we puttered around before we went to UCSF. Natalie needed her dressing changed on Sunday. When we called the hospital to let them know we were coming in, they said they wanted to draw some blood to see where her counts were at as well as do the dressing change. Natalie and Sean decorated the cookies and we brought them for the nurses. We got into UCSF about 2pm and stayed a couple hours, chatting merrily with Robin as she changed Natalie's dressing. Robin also brought Natalie a slice of ham and another nurse gave her a chocolate cupcake, which Natalie slipped to me. Robin mentioned that she made scalloped potatoes, but they were gone, so we didn't get any. When Robin was out, Natalie said she didn't want them anyway, but after I explained that they were cheesy potatoes, she changed her tune! Natalie wanted to stay at the hospital longer, then we reminded her that we still had the Easter egg hunt at home.
We picked up some Yummy Yummy special fried rice, then Natalie wanted to see the You See Sushi storefront, so we drove back that way. Finally got home about 5pm, then Tammy jumped right into cooking scalloped potatoes. Tammy’s mom made 5 spice chicken, using organic chickens. While the potatoes were browning, we had our Easter egg hunt. Natalie didn't want Sean to get a head start, so we hid a dozen eggs for Natalie in her room and a dozen in Sean's room. We cut them loose and they had a grand time.
Ate dinner, did dishes, gave Sean and Natalie a bath, then put a movie on for the kiddies. What a day! We are so glad that we got to be home together for Easter.
We also found out that night that Natalie’s counts had dropped to 270. Her counts are still low so it’s looking more like we go back to the hospital next Tuesday for her last round of chemo. We are praying that her counts go up. We are enjoying our extended time home as a family.
Friday, April 10, 2009
We're Home!
Sorry for not updating yesterday. We found out that very morning that Natalie could go home so it was a whirlwind for us to pack all her stuff and get her situated at home. Boy, does she have a lot of stuff!
We've been enjoying our family time together at home. Sean was leaping with joy when he saw Natalie at the door. Natalie LOVES her new bed and the elephant quilt that Mary made for her. She spent most of the day in her new bed playing with Sean and their stuffed animals.
We decided to dye Easter eggs last night. That was really fun for both Natalie and Sean. Natalie had forgotten how fun it is to dye eggs. We think it was because last year we didn't stick with the tradition because we were in Niagara Falls for Easter. The year before we were in Seattle so it's been a long time. Of course, Sean was really rough with his boiled eggs since it was his first time. It was a miracle he didn't crack any.
Today, Easter packages came in the mail for the kids from their grandparents and Uncle Herb and Auntie Linda. They are both happily eating and playing with their Easter treats right now. We are doing well. We're praying for no fevers so Natalie can stay home until next Tuesday!
We've been enjoying our family time together at home. Sean was leaping with joy when he saw Natalie at the door. Natalie LOVES her new bed and the elephant quilt that Mary made for her. She spent most of the day in her new bed playing with Sean and their stuffed animals.
We decided to dye Easter eggs last night. That was really fun for both Natalie and Sean. Natalie had forgotten how fun it is to dye eggs. We think it was because last year we didn't stick with the tradition because we were in Niagara Falls for Easter. The year before we were in Seattle so it's been a long time. Of course, Sean was really rough with his boiled eggs since it was his first time. It was a miracle he didn't crack any.
Today, Easter packages came in the mail for the kids from their grandparents and Uncle Herb and Auntie Linda. They are both happily eating and playing with their Easter treats right now. We are doing well. We're praying for no fevers so Natalie can stay home until next Tuesday!
Tuesday, April 7, 2009
Counts Are Up
Natalie's ANC is at 270 today. Please pray it goes way up tomorrow so we can be home together for Easter!
Friday, April 3, 2009
Specific Prayer Request
I forgot to ask in my previous post for all of you to pray that Natalie's bone marrow recovers this coming week. Her ANC needs to be at 500 for us to go home. We would love to be home for Easter. Thank you.
It's Been Quite A Week
(by Tammy)
We've had quite a week, but we are still standing with help from our friends and family. Natalie's counts have been crawling up and dipping and crawling up again. Today she is at 110. Platelets are still low so it's a sign to me that her bone marrow has not recovered from the last chemo hit.
This is what our week has been like:
Sunday- We got the news that Grant's Grandma passed away peacefully in her sleep the night before. The news put us in a little depression the next couple of days because we were so hoping to get to go down there all together to see her this summer.
Tuesday morning- I was feeling pretty warm and checked my temperature. Sure enough, I had a fever. I didn't have any other symptoms like a cough, sore throat, or runny nose. I just felt worn down and hot. Poor Sean had to stay home and take care of me that day because he had already been exposed to whatever I possibly had. He was such a sweet boy though. He brought up a bottle of water for me without me asking him to and said, "Mama, I think you should drink some water." Then he went downstairs to play on the computer, got himself some Kix cereal to eat, played on his DS, checked on me, played Monopoly with his stuffed animals, watched some tv, checked on me again, and read some of his books. He is a truly an amazing 4 year old. He is not only a little genius in the making ( he can read and do math, which he taught himself while we've been occupied with Natalie at the hospital), he has such a great heart. At some point, I did make hotdogs and broccoli for lunch for us. I think we had canned chicken noodle soup for dinner. It was my night at the hospital, but I had to call Grant to tell him that I couldn't go because I was sick. I felt horrible because he had such a busy schedule lined up for work on Wed, and I felt worse when Natalie was really sad that I wasn't coming. I threw a pity party for myself that night, complete with tears and could almost hear the sad violin music playing in the background. Yes, it was pretty pathetic. Once I realized it, I made myself snap out of it and send an SOS out to some friends for help-those Natalie would feel okay with spending some nights at the hospital in case the fever lingered.
Wednesday- No fever, but decided to stay away from Natalie for 24 hours just in case. Stayed in bed most of the day, and Sean wanted to be near me. I decided to change and wash all my sheets and duvet cover that I've been sleeping in the past few days and ended up washing my work Blackberry with it. This is what happens when an exhausted mom tries to do laundry. My mom came to the rescue and stayed at the hospital that night so Grant could get some rest. My poor husband had to help me try to revive my BB once I realized what I had done. I didn't think it was even any possibility of a revival after 30 minutes of wash, rinse, and spin. Grant somehow knows this fact- if you soak a wet electronic device in rice, it absorbs all the moisture. How does he know this stuff? He was confident that my BB had 50 percent chance of working again as he quickly takes the chip and battery out, and puts the BB in rice. Apparently, the chip and battery can survive anything.
Thursday- I had to tell my boss what I had done and tell him that I will pay for a cost of a new BB if the damaged one does not make it. He tells me, "Don't be ridiculous! It's a work expense and stuff like this happens. I need you to have a reliable device since you are working almost entirely remotely these days. Get a new BB. Trust me, I get the better end of this deal." He is a wonderful boss. He has a wonderful wife too who is making an elephant quilt and pillowcase for Natalie. This turned out to be a great day. I had friends showing up at my doorstep willing to help me with cleaning my house, loading me up with immune boosters, care packages, and refreshed my soul with their friendship. As humbling as it was to ask for help, it is so encouraging when it comes.
We are still mourning the loss of Grandma, but Grant is keeping her legacy alive by teaching Natalie blackjack and telling her about all the great things Grandma did. Blackjack is a game that Grandma had taught Grant.
We've had quite a week, but we are still standing with help from our friends and family. Natalie's counts have been crawling up and dipping and crawling up again. Today she is at 110. Platelets are still low so it's a sign to me that her bone marrow has not recovered from the last chemo hit.
This is what our week has been like:
Sunday- We got the news that Grant's Grandma passed away peacefully in her sleep the night before. The news put us in a little depression the next couple of days because we were so hoping to get to go down there all together to see her this summer.
Tuesday morning- I was feeling pretty warm and checked my temperature. Sure enough, I had a fever. I didn't have any other symptoms like a cough, sore throat, or runny nose. I just felt worn down and hot. Poor Sean had to stay home and take care of me that day because he had already been exposed to whatever I possibly had. He was such a sweet boy though. He brought up a bottle of water for me without me asking him to and said, "Mama, I think you should drink some water." Then he went downstairs to play on the computer, got himself some Kix cereal to eat, played on his DS, checked on me, played Monopoly with his stuffed animals, watched some tv, checked on me again, and read some of his books. He is a truly an amazing 4 year old. He is not only a little genius in the making ( he can read and do math, which he taught himself while we've been occupied with Natalie at the hospital), he has such a great heart. At some point, I did make hotdogs and broccoli for lunch for us. I think we had canned chicken noodle soup for dinner. It was my night at the hospital, but I had to call Grant to tell him that I couldn't go because I was sick. I felt horrible because he had such a busy schedule lined up for work on Wed, and I felt worse when Natalie was really sad that I wasn't coming. I threw a pity party for myself that night, complete with tears and could almost hear the sad violin music playing in the background. Yes, it was pretty pathetic. Once I realized it, I made myself snap out of it and send an SOS out to some friends for help-those Natalie would feel okay with spending some nights at the hospital in case the fever lingered.
Wednesday- No fever, but decided to stay away from Natalie for 24 hours just in case. Stayed in bed most of the day, and Sean wanted to be near me. I decided to change and wash all my sheets and duvet cover that I've been sleeping in the past few days and ended up washing my work Blackberry with it. This is what happens when an exhausted mom tries to do laundry. My mom came to the rescue and stayed at the hospital that night so Grant could get some rest. My poor husband had to help me try to revive my BB once I realized what I had done. I didn't think it was even any possibility of a revival after 30 minutes of wash, rinse, and spin. Grant somehow knows this fact- if you soak a wet electronic device in rice, it absorbs all the moisture. How does he know this stuff? He was confident that my BB had 50 percent chance of working again as he quickly takes the chip and battery out, and puts the BB in rice. Apparently, the chip and battery can survive anything.
Thursday- I had to tell my boss what I had done and tell him that I will pay for a cost of a new BB if the damaged one does not make it. He tells me, "Don't be ridiculous! It's a work expense and stuff like this happens. I need you to have a reliable device since you are working almost entirely remotely these days. Get a new BB. Trust me, I get the better end of this deal." He is a wonderful boss. He has a wonderful wife too who is making an elephant quilt and pillowcase for Natalie. This turned out to be a great day. I had friends showing up at my doorstep willing to help me with cleaning my house, loading me up with immune boosters, care packages, and refreshed my soul with their friendship. As humbling as it was to ask for help, it is so encouraging when it comes.
We are still mourning the loss of Grandma, but Grant is keeping her legacy alive by teaching Natalie blackjack and telling her about all the great things Grandma did. Blackjack is a game that Grandma had taught Grant.
Wednesday, April 1, 2009
Natalie and blackjack
-grant
Natalie has been clearing about $10/day for 3 days in our blackjack lessons. Today I took my lunch break and played with her again. We played with 3 of her elephants. I also taught her how I can:
stack the deck (whoa, I got 4 blackjacks in a row!) and
deal from the bottom of the deck (4 blackjacks again?).
I'm not teaching her to cheat, I'm teaching her how to catch a cheater. I explained that to her. As I think about it, I also showed her how to keep her cards hidden.
There is some math involved, because I make her count her winnings and she has to add up the cards. I explained the concept of counting cards, but that and odds are pretty fuzzy to her. For chips, we're using these little paper stars she folded. They are different colors, with denominations she made up (nickel, dime, 15 cents, 24 cents, and quarter).
On our last hand, she was the dealer. I bet $1 and got two sevens. I split the 7s. The first 7 stood, the 2nd 7 drew another 7, so I split again. She ended up busting, so I cleared $3. She still had over $11 left in her pile. She's happy, I'm happy, now I get to go back to work and she hopped on her DS.
In other news, her counts dropped from 80 yesterday to 60 today. We have more blackjack ahead. . .
Natalie has been clearing about $10/day for 3 days in our blackjack lessons. Today I took my lunch break and played with her again. We played with 3 of her elephants. I also taught her how I can:
stack the deck (whoa, I got 4 blackjacks in a row!) and
deal from the bottom of the deck (4 blackjacks again?).
I'm not teaching her to cheat, I'm teaching her how to catch a cheater. I explained that to her. As I think about it, I also showed her how to keep her cards hidden.
There is some math involved, because I make her count her winnings and she has to add up the cards. I explained the concept of counting cards, but that and odds are pretty fuzzy to her. For chips, we're using these little paper stars she folded. They are different colors, with denominations she made up (nickel, dime, 15 cents, 24 cents, and quarter).
On our last hand, she was the dealer. I bet $1 and got two sevens. I split the 7s. The first 7 stood, the 2nd 7 drew another 7, so I split again. She ended up busting, so I cleared $3. She still had over $11 left in her pile. She's happy, I'm happy, now I get to go back to work and she hopped on her DS.
In other news, her counts dropped from 80 yesterday to 60 today. We have more blackjack ahead. . .
Thursday, March 26, 2009
Are her counts 400?
-g
10:49AM Natalie and I were talking about her counts. We hadn't heard what they were today. I was hesitant, because I had prayed that her counts were going to be 50 yesterday, 250 today, and 500 Friday. Her counts were 10 on Monday and 30 on Tuesday, so I figured they could reach 50 by Wednesday. If they kept climbing, we could go home Friday or Saturday! That didn't happen. Her counts dropped to 10 yesterday, so I was pretty bummed.
When I asked her today what she thought her counts were, she said 100. I was afraid and I told Natalie, "I'm afraid to believe, because I don't want to be disappointed again."
Natalie's simple response: "I'm not afraid to believe. God can do anything." Out of the mouths of babes. . .
Tracy, the nurse walked in seconds later. Natalie burst out and asked what her counts were. 400. I was still afraid to believe. I said slowly, skeptically, "They must be 40." I felt terrible, because I was such a wet blanket. Tracy left and checked again. Natalie told me I'd better start packing. I got the suitcase out guiltily. When Tracy returned, she said that Natalie's counts were 10 yesterday and 400 today. Whoa. I almost started crying. I told Tracy about my prayer yesterday.
We called Tammy and told her the good news, both about Natalie's counts and her faith. Tammy was super happy. We chatted a bit and hung up. Moments later, the doctors came in, making their rounds. They said her counts were 40. I was disappointed, but I knew that was much more likely. Tracy was still in the room, checking Natalie's lines. She looked mortified. I told her not to worry about it, because at least the counts are going up.
After they left, Tracy raced out to check the computer again. She returned and apologized profusely. She had looked at the wrong line on the computer; Natalie's white blood cell counts were at 400, but her ANCs were only at 10. After Tracy left, I talked to Natalie a bit and asked if she was mad at Tracy or at God. "A little bit," she replied, then went back to playing on her DS.
Me? I'm a little disappointed, but I'm more disappointed in my lack of faith and my cowardice. It can hurt to believe, but am I doing more damage by not believing?
10:49AM Natalie and I were talking about her counts. We hadn't heard what they were today. I was hesitant, because I had prayed that her counts were going to be 50 yesterday, 250 today, and 500 Friday. Her counts were 10 on Monday and 30 on Tuesday, so I figured they could reach 50 by Wednesday. If they kept climbing, we could go home Friday or Saturday! That didn't happen. Her counts dropped to 10 yesterday, so I was pretty bummed.
When I asked her today what she thought her counts were, she said 100. I was afraid and I told Natalie, "I'm afraid to believe, because I don't want to be disappointed again."
Natalie's simple response: "I'm not afraid to believe. God can do anything." Out of the mouths of babes. . .
Tracy, the nurse walked in seconds later. Natalie burst out and asked what her counts were. 400. I was still afraid to believe. I said slowly, skeptically, "They must be 40." I felt terrible, because I was such a wet blanket. Tracy left and checked again. Natalie told me I'd better start packing. I got the suitcase out guiltily. When Tracy returned, she said that Natalie's counts were 10 yesterday and 400 today. Whoa. I almost started crying. I told Tracy about my prayer yesterday.
We called Tammy and told her the good news, both about Natalie's counts and her faith. Tammy was super happy. We chatted a bit and hung up. Moments later, the doctors came in, making their rounds. They said her counts were 40. I was disappointed, but I knew that was much more likely. Tracy was still in the room, checking Natalie's lines. She looked mortified. I told her not to worry about it, because at least the counts are going up.
After they left, Tracy raced out to check the computer again. She returned and apologized profusely. She had looked at the wrong line on the computer; Natalie's white blood cell counts were at 400, but her ANCs were only at 10. After Tracy left, I talked to Natalie a bit and asked if she was mad at Tracy or at God. "A little bit," she replied, then went back to playing on her DS.
Me? I'm a little disappointed, but I'm more disappointed in my lack of faith and my cowardice. It can hurt to believe, but am I doing more damage by not believing?
Wednesday, March 25, 2009
Natalie's Appetite is Back
Natalie is eating again. Yeah! Yesterday she ate half of a grilled cheese sandwich and a little bit of a snickerdoodle cookie. Today she had some bites of a snickerdoodle cookie for breakfast, a whole grilled cheese sandwich for lunch, and Grant was heating up an uncrustable peanut butter and jelly sandwich for Natalie when I left the hospital tonight. Oh, she also ate a lot of the Hello Kitty whistle candies that Christine gave to her.
We still need her counts to go up. They were at 10 last night so don't know what they are tonight. They did take her off 2 of the 3 antibiotics she was on so we're hoping that may help her counts go up.
Natalie is doing well. We've been making stuffed bunnies and elephants out of t-shirts. So far, we've made a mama bunny, papa bunny, baby bunny, mama elephant and baby elephant. She has decided that she is not going to give them real names like her elephants though. They are not as perfect as her Gran's bunnies since we're stitching and cutting them by hand. Natalie designs the bunnies and stuffs them. I'm in charge of stitching them since it makes me nervous to see Natalie working with a sharp needle with her low platelet count.
We've also been playing the paper doll game that her Auntie Tracy sent to her. She loves that game and we play it every day at least once a day.
Grant and I have been taking turns to stay overnight with Natalie since it's grueling be there when she is on antibiotics. Every night we have to deal with the symphony of beeps from the IV infusion equipment througout the night as well as the numerous bathroom runs Natalie needs to take because of the high volume of liquids they are infusing into her body to flush the medicines through. Last night was the worst because right when I started to fall asleep, somebody started banging on pipes upstairs to fix something from 5am-6am. Then at 6 am, the hospital decided to do a fire alarm test with the fire alarms. At 7 am, I posted up our "Do Not Disturb" sign outside the door so that Natalie and I could sleep for a bit. Actually, it was for me to sleep. Natalie can sleep through a hurricane. We didn't wake up until 11 am today. When people comment that we like to sleep in, I have no idea where to start to explain to them that we are actually not sleeping in. They just have no idea how it feels to live in a hospital room.
On a completely different note, we would like to ask everyone to keep Grant's grandma in their prayers. She came down with pneumonia and the doctors don't think she has enough strength to fight through it. We are sad because we really wanted to go down to see her as a family when Natalie was done with her treatments. Please pray that she can fight through it.
We still need her counts to go up. They were at 10 last night so don't know what they are tonight. They did take her off 2 of the 3 antibiotics she was on so we're hoping that may help her counts go up.
Natalie is doing well. We've been making stuffed bunnies and elephants out of t-shirts. So far, we've made a mama bunny, papa bunny, baby bunny, mama elephant and baby elephant. She has decided that she is not going to give them real names like her elephants though. They are not as perfect as her Gran's bunnies since we're stitching and cutting them by hand. Natalie designs the bunnies and stuffs them. I'm in charge of stitching them since it makes me nervous to see Natalie working with a sharp needle with her low platelet count.
We've also been playing the paper doll game that her Auntie Tracy sent to her. She loves that game and we play it every day at least once a day.
Grant and I have been taking turns to stay overnight with Natalie since it's grueling be there when she is on antibiotics. Every night we have to deal with the symphony of beeps from the IV infusion equipment througout the night as well as the numerous bathroom runs Natalie needs to take because of the high volume of liquids they are infusing into her body to flush the medicines through. Last night was the worst because right when I started to fall asleep, somebody started banging on pipes upstairs to fix something from 5am-6am. Then at 6 am, the hospital decided to do a fire alarm test with the fire alarms. At 7 am, I posted up our "Do Not Disturb" sign outside the door so that Natalie and I could sleep for a bit. Actually, it was for me to sleep. Natalie can sleep through a hurricane. We didn't wake up until 11 am today. When people comment that we like to sleep in, I have no idea where to start to explain to them that we are actually not sleeping in. They just have no idea how it feels to live in a hospital room.
On a completely different note, we would like to ask everyone to keep Grant's grandma in their prayers. She came down with pneumonia and the doctors don't think she has enough strength to fight through it. We are sad because we really wanted to go down to see her as a family when Natalie was done with her treatments. Please pray that she can fight through it.
Tuesday, March 24, 2009
Make A Wish
As many of you know, Natalie's big wish when she is done with her treatment is to go to Disneyworld. Here is something cool that we can all do to help with funding her wish and the wishes of others in the bay area:
Recipe to help Make A Wish Foundation receive funding for a wish!
1. Go to www.StirringUpWishes.com
2. Vote for the Greater Bay Area chapter
3. Repeat daily
4. Enjoy knowing YOU are helping to fund a wish!
Natalie's counts are back down to 10 today, but she seems to be in good spirits. She wants to make butter tonight so we'll see how that goes.
Recipe to help Make A Wish Foundation receive funding for a wish!
1. Go to www.StirringUpWishes.com
2. Vote for the Greater Bay Area chapter
3. Repeat daily
4. Enjoy knowing YOU are helping to fund a wish!
Natalie's counts are back down to 10 today, but she seems to be in good spirits. She wants to make butter tonight so we'll see how that goes.
Monday, March 23, 2009
Natalie's counts are at 20.
-grant
Slow and steady wins the race. . .
Natalie is tons better. She has more energy and is doing some art right now with a UCSF volunteer.
I got a ton of help this Saturday at home with her new bed. First, Adano and Gene came to help tear down the old bed and futon. Then Gene, Sean and I went to pickup Natalie's new bed. Geno's Highlander almost got hit by a wildman driving a pickup, but Natalie's angel was on the job and they stopped in time. Gene finished the delivery and took off.
Sean and I put the bed together. I had him bring some of the small boxes upstairs. Then he opened them and took the pieces out of the packing. He held up the headboard while I positioned the sides and handed me some of the small pieces.
Don showed up and helped me toss the packaging in the recycling bin, then we filled up his truck with the old stuff. It took two trips! A family in our church had a house fire, but they are currently staying in a hotel. Don is going to store our stuff in his garage until the family has a more permanent home.
Alvin showed up right when we were finishing up with Don's 2nd load. Don took off, then Armando brought his truck and we drove over to Tony's place. Tony heard that Natalie was getting a new bed and wanted to see if Sean wanted his old bunkbeds. It just so happened that Tony had just gotten new beds for his sons, so we scored their nice wooden bunkbed.
Alvin, Sean and I drove together and Armando drove separately. We went up Tony's steep driveway, then I left Sean in the car and ran to see Tony's new puppy. Yarg, I fergot me son! I carried Sean in and showed him the puppy. He didn't want to get licked, but he wandered around until he found the electric slot cars. He played with the cars while we loaded up. I asked him later that night and Sean said that was his favorite part of the day. (Yes, even better than helping me. I was kinda hard on him. "Gimme the little piece. No, the little piece! The other little piece." *sigh*)
We went back home, unloaded the, ahem, certified preowned bunkbed, put it together, then they left. There were a lot of people involved and it was pretty car-azy morning, but it all worked out. I was stressed because there were so many moving pieces and I didn't have solid commitments. We had a lot of help, so I wasn't that tired physically, but I was more mentally exhausted. Too much jumping to conclusions?
I spent the night at the hospital Saturday. Natalie is on 3 different antibiotics, plus they are doing 4 hour feeds. Then there is the normal checking vital signs (every 4 hours) and bathroom breaks. That makes for many interruptions throughout the night. We can't really sleep in, because they bring breakfast, take out our trash, check for dirty linen, yadda, yadda, yadda. Yadda. Yadda? I made up a do not disturb sign and taped it on the door handle. I figure it buys me maybe another hour of undisturbed rest.
Slow and steady wins the race. . .
Natalie is tons better. She has more energy and is doing some art right now with a UCSF volunteer.
I got a ton of help this Saturday at home with her new bed. First, Adano and Gene came to help tear down the old bed and futon. Then Gene, Sean and I went to pickup Natalie's new bed. Geno's Highlander almost got hit by a wildman driving a pickup, but Natalie's angel was on the job and they stopped in time. Gene finished the delivery and took off.
Sean and I put the bed together. I had him bring some of the small boxes upstairs. Then he opened them and took the pieces out of the packing. He held up the headboard while I positioned the sides and handed me some of the small pieces.
Don showed up and helped me toss the packaging in the recycling bin, then we filled up his truck with the old stuff. It took two trips! A family in our church had a house fire, but they are currently staying in a hotel. Don is going to store our stuff in his garage until the family has a more permanent home.
Alvin showed up right when we were finishing up with Don's 2nd load. Don took off, then Armando brought his truck and we drove over to Tony's place. Tony heard that Natalie was getting a new bed and wanted to see if Sean wanted his old bunkbeds. It just so happened that Tony had just gotten new beds for his sons, so we scored their nice wooden bunkbed.
Alvin, Sean and I drove together and Armando drove separately. We went up Tony's steep driveway, then I left Sean in the car and ran to see Tony's new puppy. Yarg, I fergot me son! I carried Sean in and showed him the puppy. He didn't want to get licked, but he wandered around until he found the electric slot cars. He played with the cars while we loaded up. I asked him later that night and Sean said that was his favorite part of the day. (Yes, even better than helping me. I was kinda hard on him. "Gimme the little piece. No, the little piece! The other little piece." *sigh*)
We went back home, unloaded the, ahem, certified preowned bunkbed, put it together, then they left. There were a lot of people involved and it was pretty car-azy morning, but it all worked out. I was stressed because there were so many moving pieces and I didn't have solid commitments. We had a lot of help, so I wasn't that tired physically, but I was more mentally exhausted. Too much jumping to conclusions?
I spent the night at the hospital Saturday. Natalie is on 3 different antibiotics, plus they are doing 4 hour feeds. Then there is the normal checking vital signs (every 4 hours) and bathroom breaks. That makes for many interruptions throughout the night. We can't really sleep in, because they bring breakfast, take out our trash, check for dirty linen, yadda, yadda, yadda. Yadda. Yadda? I made up a do not disturb sign and taped it on the door handle. I figure it buys me maybe another hour of undisturbed rest.
Sunday, March 22, 2009
10 is better than 0
Natalie's ANC was at 10 last night. Also, they are seeing some monocytes, which is good. Usually, the neutraphils come right after the monocytes. We hope they are up more from last night.
She seems to be back to normal. She's been energetic most of the day, although a little fiesty. (Sorry Yolanda! Natalie does want you to come back and has a note for you if you want to come back to see her next week.) We will take fiesty over listless anytime though.
She is back to asking a million questions to anyone who comes in. Right now, she is tormenting one of the PCAs (patient care assistants) with her questions. He just said that she is the only person ever in the history of all the patients on 7 Long who has ever asked him why the sticker on the oxygen machine is at a degree. She's asked him probably over 30 questions so far, including why he has more hair in the picture on his badge. I told him to run out while he can, but he seems to be enjoying her questions.
She woke up playing with her DS instead of sleeping half the day. She also told us that she feels much better.
Thank you for all your prayers. Natalie still has not eaten any solid food since Tuesday, but they are giving her a nutritional drink through her nose feeding tube. That should give her 75% of her daily nutritional requirement. We are hoping that she can eat something solid tomorrow.
She seems to be back to normal. She's been energetic most of the day, although a little fiesty. (Sorry Yolanda! Natalie does want you to come back and has a note for you if you want to come back to see her next week.) We will take fiesty over listless anytime though.
She is back to asking a million questions to anyone who comes in. Right now, she is tormenting one of the PCAs (patient care assistants) with her questions. He just said that she is the only person ever in the history of all the patients on 7 Long who has ever asked him why the sticker on the oxygen machine is at a degree. She's asked him probably over 30 questions so far, including why he has more hair in the picture on his badge. I told him to run out while he can, but he seems to be enjoying her questions.
She woke up playing with her DS instead of sleeping half the day. She also told us that she feels much better.
Thank you for all your prayers. Natalie still has not eaten any solid food since Tuesday, but they are giving her a nutritional drink through her nose feeding tube. That should give her 75% of her daily nutritional requirement. We are hoping that she can eat something solid tomorrow.
Saturday, March 21, 2009
Getting A Little Better
I am sitting in complete darkness typing this and trying to stay as quiet as possible while Natalie is sleeping. Natalie is getting a little better. Her high fever broke Thursday evening. She didn't have a fever all day Friday, but had a low grade fever at midnight. She seems a little better, but still weak since she has not eaten anything for 3 days. They are giving her some nutrition through her nose feeding tube to help her heal. The rate is very slow though so it doesn't upset her tummy. We are hoping that she can tolerate it so that they can increase the rate tomorrow. Her ANC is still 0. This is probably the worst round we have gone through so far and makes me appreciate the many times that Natalie has been energetic. She had a fever in the first round, her counts were climbing so it wasn't as scary as this. I think I would rather take her energy any day to this.
The doctors say this is what they actually expect from Natalie and that the prior rounds were unusually amazing.
Last night, she was a little back to her normal curious self and asking her nurse lots of questions about his day, what he picked up for dinner, about the birthday party he went to and if they had a cake there, and if he ate any, and why not, and why he wore glasses the other night, etc.. Then, her stomach started bothering her from the nutrition so she was in tremendous pain. She didn't want to talk anymore.
The nurses tell me they know Natalie is not feeling well when she doesn't ask at least 5 questions a day.
We are hanging in there. Of course, it's all scary and hard but we are hoping that Natalie's counts go up soon.
The doctors say this is what they actually expect from Natalie and that the prior rounds were unusually amazing.
Last night, she was a little back to her normal curious self and asking her nurse lots of questions about his day, what he picked up for dinner, about the birthday party he went to and if they had a cake there, and if he ate any, and why not, and why he wore glasses the other night, etc.. Then, her stomach started bothering her from the nutrition so she was in tremendous pain. She didn't want to talk anymore.
The nurses tell me they know Natalie is not feeling well when she doesn't ask at least 5 questions a day.
We are hanging in there. Of course, it's all scary and hard but we are hoping that Natalie's counts go up soon.
Wednesday, March 18, 2009
Please Pray
Natalie spiked a fever last night and they started antibiotics on her right away. Fever is still high today and the blood cultures they did show signs of a strep infection. We are really praying it's minor and her fever will break today.
We don't know how she got it but since her counts are low, I was told that she could have easily picked it up from any body who has been around her even if they didn't show signs of it because their body has immunity to fight it.
Please pray for Natalie and us.
We don't know how she got it but since her counts are low, I was told that she could have easily picked it up from any body who has been around her even if they didn't show signs of it because their body has immunity to fight it.
Please pray for Natalie and us.
Monday, March 16, 2009
Low Again
Natalie's counts are extremely low again. Her ANC was at 40 on Saturday and I was afraid to ask what they were yesterday. I knew there was nothing I could do about it and it would just stress me out more. This round seems to be kicking her hard. She has not been her normal, energetic self. I don't know if she is just getting tired of the hospital or if it's all the medication she is getting. Even her nurses have noticed that she is more withdrawn and quiet. She still has a headache as well.
Last Wed and Thursday were her best days so far this round. She was happy and energetic. She even went down to play Bingo. Of course, her ANC was at 2,640 on Wed so that made a big difference.
We are hoping and praying that her counts start going up this week. We are a little down too to see Natalie this way. It's also hard to be in a room this long without a view too, even if it's a nice room. Sometimes we lose track of time just being in there. Please continue to pray for no complications for Natalie and her counts go up soon!
Last Wed and Thursday were her best days so far this round. She was happy and energetic. She even went down to play Bingo. Of course, her ANC was at 2,640 on Wed so that made a big difference.
We are hoping and praying that her counts start going up this week. We are a little down too to see Natalie this way. It's also hard to be in a room this long without a view too, even if it's a nice room. Sometimes we lose track of time just being in there. Please continue to pray for no complications for Natalie and her counts go up soon!
Monday, March 9, 2009
A Little Headache
Natalie still has a mild headache. The staff here thinks it could be from her lumbar puncture, and it could last for a couple more days. They suggested caffeine to help with it so I gave Natalie some Barq's soda this morning. According to Natalie, she felt better the moment she sipped the soda. She did a couple of scrapbook pages with me, then with Christine. She really got into it so I am happy that it is something new for this round as a project for her.
Natalie is asleep now and has been napping since 4pm. It's unusual for her to nap this early on into her chemo session, but I do think that all the activity of the hospital and home may be catching up to her. I took a long nap today too as I am feeling sluggish as well.
We are done with chemo for this fourth round. Today was the last dose. We just have to wait now to see how her body responds and pray it recovers fast.
Natalie is asleep now and has been napping since 4pm. It's unusual for her to nap this early on into her chemo session, but I do think that all the activity of the hospital and home may be catching up to her. I took a long nap today too as I am feeling sluggish as well.
We are done with chemo for this fourth round. Today was the last dose. We just have to wait now to see how her body responds and pray it recovers fast.
Thursday, March 5, 2009
Hanging In There
We are hanging in there and trying to get settled back into hospital life again. They put us in a really different room this time. It's pretty nice but has no view. Personally, I prefer having a small room with a nice view if given the choice. Natalie likes the room though because it feels like she is at a hotel.
I've been trying to keep an eye on Natalie because she doesn't seem to be as energetic as she normally is. Yesterday she felt some pain from the biopsy procedure they did on her. She had a very busy day filled with visitors and by the evening her back was hurting her. They gave her some morphine, which knocked her out for a couple of hours.
Today the pain went away, but she was complaining of a headache. I'm not sure if it's because she had a really busy time at home or that all the medication she is on is catching up with her. I'm just trying to make sure she gets some rest and not push too hard.
Natalie and I are sad that we haven't been able to see Sean and Grant as much as we normally get to when we have family here to help. We really miss them so we are looking forward to the weekend when they can come around more. Natalie is also looking forward to when her Ee Ee and Jason comes next Friday to stay at the hospital with her.
I am a little worried about Natalie, but hope that she feels better tomorrow. I think she is also a little bored and wanting to do something new. We've been making dolls and working on a collage. She also did a little scrapbooking. The hospital has all the scrapbooking supplies she needs to work on a scrapbook about her stay at the hospital. Hopefully when she feels better she'll get into it more.
Natalie and I have been praying together every night before she goes to bed for her to get through the last two treatments without any complications and fevers. I hate the feeling of not being able to be in control of our situation. I feel like even though she's done great the last 3 rounds, she could still get really sick because each round is different and so intense.
We'll keep you posted on how she does over this weekend.
I've been trying to keep an eye on Natalie because she doesn't seem to be as energetic as she normally is. Yesterday she felt some pain from the biopsy procedure they did on her. She had a very busy day filled with visitors and by the evening her back was hurting her. They gave her some morphine, which knocked her out for a couple of hours.
Today the pain went away, but she was complaining of a headache. I'm not sure if it's because she had a really busy time at home or that all the medication she is on is catching up with her. I'm just trying to make sure she gets some rest and not push too hard.
Natalie and I are sad that we haven't been able to see Sean and Grant as much as we normally get to when we have family here to help. We really miss them so we are looking forward to the weekend when they can come around more. Natalie is also looking forward to when her Ee Ee and Jason comes next Friday to stay at the hospital with her.
I am a little worried about Natalie, but hope that she feels better tomorrow. I think she is also a little bored and wanting to do something new. We've been making dolls and working on a collage. She also did a little scrapbooking. The hospital has all the scrapbooking supplies she needs to work on a scrapbook about her stay at the hospital. Hopefully when she feels better she'll get into it more.
Natalie and I have been praying together every night before she goes to bed for her to get through the last two treatments without any complications and fevers. I hate the feeling of not being able to be in control of our situation. I feel like even though she's done great the last 3 rounds, she could still get really sick because each round is different and so intense.
We'll keep you posted on how she does over this weekend.
Wednesday, March 4, 2009
Monday, March 2, 2009
Going Back to the Hospital Again...
Natalie's ANC is at 1847 today so we are going back to the hospital tomorrow morning at 8 am to start our next round. Please pray for this round to go as well as her previous three rounds. The last round was as amazing as the second round since Natalie did not get a fever. Thank you all for your prayers. They are helping so much so please continue praying for Natalie!
As with the last round, Natalie will need eyedrops again. She is also going to be given a new chemo medicine that she has never had before as well as an experimental medicine that she had in her first round. As always, every round of chemo is intense so we are grateful for all your support. We keep thinking it will get easier every round, but the truth is battling AML is not easy.
We did have such a wonderful time home as a family. It was a much needed little vacation away from the hospital.
Natalie misses all her friends at the hospital so she is happy to go back to see them.
As with the last round, Natalie will need eyedrops again. She is also going to be given a new chemo medicine that she has never had before as well as an experimental medicine that she had in her first round. As always, every round of chemo is intense so we are grateful for all your support. We keep thinking it will get easier every round, but the truth is battling AML is not easy.
We did have such a wonderful time home as a family. It was a much needed little vacation away from the hospital.
Natalie misses all her friends at the hospital so she is happy to go back to see them.
Going Back to the Hospital Again...
Hi,
I am going back to the hospital for my fourth round of chemo. Please pray for me.
I am going back to the hospital for my fourth round of chemo. Please pray for me.
Sunday, March 1, 2009
Home after the 3rd round
It is so nice to be home together as a family. Comfortable. Relaxing, therapeutic. We are taking advantage of these few days to rest and recover.
We have all the comforts of home. Tammy and I are the nurses; I flush Natalie's broviac and Tammy checks her temperature. Sean watches cautiously. We don't get interrupted every hour by doctors, nurses, cafeteria ladies, cleaners, linen collectors, or beverage offering volunteers. Of course, we also don't let Natalie eat and drink in bed. Natalie said she'd rather be able to walk all around without a mask. We have to do the laundry (but we can do it together!), change the sheets, vaccuum, cook, clean, wash dishes, throw out the trash. The routine is comforting; I kinda like doing things for myself and I love doing things together.
Nothing wakes us up at night; no beeping IV pole, no crying neighbors, nobody checking vitals. In the morning, Natalie and Sean can run into our room and snuggle with us in bed. We can take naps, get the mail, have some privacy. Hearing Natalie and Sean play together is the best thing. They laugh together. They have all their toys and lots of room to play. They fight, too, but I can send one of them upstairs or downstairs. The fighting is no fun, but it does make the fun sweeter. Natalie helps Sean with his Pokemon DS game and Sean goes downstairs to get Natalie's stylus for her. Tammy, Natalie and Sean cook together in the kitchen and I get to read a book and listen to them.
-g
We have all the comforts of home. Tammy and I are the nurses; I flush Natalie's broviac and Tammy checks her temperature. Sean watches cautiously. We don't get interrupted every hour by doctors, nurses, cafeteria ladies, cleaners, linen collectors, or beverage offering volunteers. Of course, we also don't let Natalie eat and drink in bed. Natalie said she'd rather be able to walk all around without a mask. We have to do the laundry (but we can do it together!), change the sheets, vaccuum, cook, clean, wash dishes, throw out the trash. The routine is comforting; I kinda like doing things for myself and I love doing things together.
Nothing wakes us up at night; no beeping IV pole, no crying neighbors, nobody checking vitals. In the morning, Natalie and Sean can run into our room and snuggle with us in bed. We can take naps, get the mail, have some privacy. Hearing Natalie and Sean play together is the best thing. They laugh together. They have all their toys and lots of room to play. They fight, too, but I can send one of them upstairs or downstairs. The fighting is no fun, but it does make the fun sweeter. Natalie helps Sean with his Pokemon DS game and Sean goes downstairs to get Natalie's stylus for her. Tammy, Natalie and Sean cook together in the kitchen and I get to read a book and listen to them.
-g
Friday, February 27, 2009
Home Sweet Home
Natalie wanted to go home so bad yesterday that she skipped Bingo. That says a lot for someone who has a passion for Thursday Bingo at the hospital!
We are happy to be home. Natalie's appetite is insatiable when she is at home. She eats non-stop. She is taking a break from arts and crafts to do something she can't do at the hospital- cook! She made herself a ham and cheese omelette this morning (with supervision of course). This afternoon, she made a pineapple upside down cake almost all by herself. The kitchen was a little disaster when she was done though. I helped out only with the parts where she had to go near the hot oven. She wanted to make homemade ravioli tonight, but eat hotdogs for dinner. I told her that we'll save the ravioli for tomorrow night then because it's a little ambitious. I've never made it before so we'll see...
Sean and Natalie are having a blast playing together. Sean is so excited that he's bouncing off the walls literally. He bounced off the couch and hit is head on the floor today. He's okay but I feel like he needs to wear a helmet with all the mischief he gets into. He knows to be careful with his sister though. He tells me, "I have to be careful with Natawee's broviac?"
While Natalie and I were baking, I asked her if she really was serious about the 500 elephants. She said, "Of course not. I just want to see if people are really reading my blog!" So for those of you who are thinking of getting her the elephants, please don't! She does love elephants though and happy to collect whatever she can collect.
I told Natalie that Maritza and Jennifer had arranged something really special for her when she is done with her treatments. The Oakland Zoo will let her come real close to the elephants and watch them feed them early in the morning before the zoo opens. She can also watch them get their pedicures. She's so excited about that!
We are doing well. Just enjoying some peace and quiet together before we start the next round of chemo next week.
We are happy to be home. Natalie's appetite is insatiable when she is at home. She eats non-stop. She is taking a break from arts and crafts to do something she can't do at the hospital- cook! She made herself a ham and cheese omelette this morning (with supervision of course). This afternoon, she made a pineapple upside down cake almost all by herself. The kitchen was a little disaster when she was done though. I helped out only with the parts where she had to go near the hot oven. She wanted to make homemade ravioli tonight, but eat hotdogs for dinner. I told her that we'll save the ravioli for tomorrow night then because it's a little ambitious. I've never made it before so we'll see...
Sean and Natalie are having a blast playing together. Sean is so excited that he's bouncing off the walls literally. He bounced off the couch and hit is head on the floor today. He's okay but I feel like he needs to wear a helmet with all the mischief he gets into. He knows to be careful with his sister though. He tells me, "I have to be careful with Natawee's broviac?"
While Natalie and I were baking, I asked her if she really was serious about the 500 elephants. She said, "Of course not. I just want to see if people are really reading my blog!" So for those of you who are thinking of getting her the elephants, please don't! She does love elephants though and happy to collect whatever she can collect.
I told Natalie that Maritza and Jennifer had arranged something really special for her when she is done with her treatments. The Oakland Zoo will let her come real close to the elephants and watch them feed them early in the morning before the zoo opens. She can also watch them get their pedicures. She's so excited about that!
We are doing well. Just enjoying some peace and quiet together before we start the next round of chemo next week.
Thursday, February 26, 2009
We're home!
Natalie's counts hit 390, so we got to go home! Busy day today, will give an update later. We expect to be home for the weekend and go back to the hospital Tuesday.
-Grant
-Grant
Wednesday, February 25, 2009
a little bit of waiting...
(post by Tammy)
Natalie's counts jumped up to 290 but we can't go home until they stay above 200 for two days in a row. Maybe tomorrow. We are a little sad.
Natalie's counts jumped up to 290 but we can't go home until they stay above 200 for two days in a row. Maybe tomorrow. We are a little sad.
Tuesday, February 24, 2009
Update
(by Tammy)
So far Natalie has not had a fever and her counts are going up. She's at 180 ANC today so if she does well and her counts go up tomorrow past 200, we may possibly get to go home for a bit again. Please say a special prayer for us that Natalie's counts will go way up tomorrow and she does not have a fever at all this entire round.
Natalie is getting bored. The nurses had compassion on her and decided to disconnect her from the IV pole last Thursday so that she can have some freedom. She loves going to the playroom without dragging that heavy thing with her.
Last Friday Lara turned 7. Remember Lara from my previous blog? Natalie gave her 7 handmade paper flowers and a note. Well, she couldn't hand them directly to her since both of their counts are low so she had Christina, the nutritionist, deliver them to Lara for her. Lara gave Natalie and Sean some party favors. It makes me happy to see a celebration on 7 Long. Even the little celebrations they have when one of the kids get to go home. There are just so many challenges at the hospital that victories are so sweet.
So far Natalie has not had a fever and her counts are going up. She's at 180 ANC today so if she does well and her counts go up tomorrow past 200, we may possibly get to go home for a bit again. Please say a special prayer for us that Natalie's counts will go way up tomorrow and she does not have a fever at all this entire round.
Natalie is getting bored. The nurses had compassion on her and decided to disconnect her from the IV pole last Thursday so that she can have some freedom. She loves going to the playroom without dragging that heavy thing with her.
Last Friday Lara turned 7. Remember Lara from my previous blog? Natalie gave her 7 handmade paper flowers and a note. Well, she couldn't hand them directly to her since both of their counts are low so she had Christina, the nutritionist, deliver them to Lara for her. Lara gave Natalie and Sean some party favors. It makes me happy to see a celebration on 7 Long. Even the little celebrations they have when one of the kids get to go home. There are just so many challenges at the hospital that victories are so sweet.
Monday, February 23, 2009
We're a special family!
(Posted by Grant.)
It has been a tough time and a dark time. I've had trouble staying positive. I got some encouraging news tonight and I'd like to share it.
Our nurse tonight is Lisa. She's worked here over 25 years and her daughter also works here. We've had her daughter before, but this is the first time we've met Lisa. When Lisa came in, she introduced herself and said she had heard good things about us. During one of our previous stays, when one of our other nurses was leaving the floor, she said that we were a special family. I wanted to ask her what she meant by special, but, of course, she left. For the most part, we don't feel very special. We frequently feel very sad and very lost. Don't get me wrong, we know that we have great friends and a great family and that we've gotten great support from both, so we feel like we _have_ a special family, but we don't feel like we _are_ a special family.
Hopefully, this explains why I was so anxious to hear what Lisa had heard about us. She told us that she never got us before because there is usually a line of nurses that sign up for Natalie. (We knew that. A handful of nurses fight to get abused by Natalie, to trade banter with her and to answer her endless questions. Natalie's regulars weren't here tonight, so Lisa finally got to meet us.) Lisa said that everybody loves Natalie, that she is a joy to be around, and that she has a nice family. Tell me about the family part! We've heard the stuff about Natalie and we get it. She is spunky and fun, so we know why they like her. Enough about her, what about us? Ok, what about me?
Lisa said something about nice parents and good parenting. I told her that helped, because we don't really know what everyone else does, we only know what we do, the mistakes we make, and how we feel. An unbiased outside perspective is invaluable. We never know if our friends are just trying to lift our spirits. Well, Natalie says she wants me to stop writing on the blog, so I guess it is time to turn in. To all a good night!
Just read this to Natalie.
-g
It has been a tough time and a dark time. I've had trouble staying positive. I got some encouraging news tonight and I'd like to share it.
Our nurse tonight is Lisa. She's worked here over 25 years and her daughter also works here. We've had her daughter before, but this is the first time we've met Lisa. When Lisa came in, she introduced herself and said she had heard good things about us. During one of our previous stays, when one of our other nurses was leaving the floor, she said that we were a special family. I wanted to ask her what she meant by special, but, of course, she left. For the most part, we don't feel very special. We frequently feel very sad and very lost. Don't get me wrong, we know that we have great friends and a great family and that we've gotten great support from both, so we feel like we _have_ a special family, but we don't feel like we _are_ a special family.
Hopefully, this explains why I was so anxious to hear what Lisa had heard about us. She told us that she never got us before because there is usually a line of nurses that sign up for Natalie. (We knew that. A handful of nurses fight to get abused by Natalie, to trade banter with her and to answer her endless questions. Natalie's regulars weren't here tonight, so Lisa finally got to meet us.) Lisa said that everybody loves Natalie, that she is a joy to be around, and that she has a nice family. Tell me about the family part! We've heard the stuff about Natalie and we get it. She is spunky and fun, so we know why they like her. Enough about her, what about us? Ok, what about me?
Lisa said something about nice parents and good parenting. I told her that helped, because we don't really know what everyone else does, we only know what we do, the mistakes we make, and how we feel. An unbiased outside perspective is invaluable. We never know if our friends are just trying to lift our spirits. Well, Natalie says she wants me to stop writing on the blog, so I guess it is time to turn in. To all a good night!
Just read this to Natalie.
-g
Thursday, February 19, 2009
"Whew, that was close!"
(post by Tammy)
Yesterday was a pretty rough day for Natalie. Her counts are really low so they had to give her a blood transfusion and platelets transfusion. It still surprises me how strong chemo is. Eventhough Natalie started this round with more platelets than the other two rounds ( she had over 1 million), the chemo knocked them all down to only 10,000 .She pretty much napped most of the day. By evening, the transfusion kicked in and she had a ravenous appetite and energy. She devoured allmost a whole banana nut muffin, some cheetos, some roasted seaweed, some rice crackers, and some madeline cookies.
Around 10 pm, her nurse noticed that Natalie needed a dressing change for the dressing around her broviac site. As they were changing it, they noticed that Natalie's sutres around the opening of the site had slid way down her line. They were worried about her broviac line being shifted from the central location and had imaging come up to take a chest xray at 11pm. Natalie and I were both scared. After we prayed together, she fell asleep. I was too racked up with worry to sleep at all so it was a bad night for me. I wanted to call Grant, but it was past midnight. I ended up emailing some friends to please pray for Natalie.
Thanks to some special prayers, today was a much better day! Natalie woke up happy that it was Thursday Bingo. She loves Thursday Bingo day. Although we were both still worried about the outcome of her xray, it couldn't take away her excitement about Bingo. To make things better, she got one of her favorite nurses today. It was a pleasant surprise because Robin does not normally work on Thursdays.
The doctors finally made their rounds at 10:30 am, and delivered good news as well. Since Natalie's line is still in the central area, the line is still good. No need for another surgical procedure to fix it! We were happy. Natalie was relieved. In her own words, "Whew, that was close." They sent a surgeon up around 3:30 pm to confirm it was okay. No more wrestling with Sean for Natalie though. We do have to be more careful with the line until her treatment is completely over and pray it doesn't move any further away from the central area where it was placed.
Natalie also got another special surprise today. Robin surprised Natalie by making a special visit to Bingo while it was being aired live. Natalie was focusing really hard playing Bingo from the tv in her room when Robin popped up on tv and called out, "N is for nurse and for Natalie". That put a really big smile on Natalie's face.
Natalie's Bingo prize? Another stuffed elephant. And it sings, flaps its ear, and moves its mouth. She named it Elloso. So, she now has twelve elephants: Elley, Ello, Eleanor, Elleyina, Ellojo, Ellloro, Ellatina, Ellafuss, Ellaney, Eloise, and I can't rember the last one. She loves elephants. Who wouldn't? They are so wise, brave, and hardworkers. There is a story behind how she got each one, but I'll save it for another day.
Yesterday was a pretty rough day for Natalie. Her counts are really low so they had to give her a blood transfusion and platelets transfusion. It still surprises me how strong chemo is. Eventhough Natalie started this round with more platelets than the other two rounds ( she had over 1 million), the chemo knocked them all down to only 10,000 .She pretty much napped most of the day. By evening, the transfusion kicked in and she had a ravenous appetite and energy. She devoured allmost a whole banana nut muffin, some cheetos, some roasted seaweed, some rice crackers, and some madeline cookies.
Around 10 pm, her nurse noticed that Natalie needed a dressing change for the dressing around her broviac site. As they were changing it, they noticed that Natalie's sutres around the opening of the site had slid way down her line. They were worried about her broviac line being shifted from the central location and had imaging come up to take a chest xray at 11pm. Natalie and I were both scared. After we prayed together, she fell asleep. I was too racked up with worry to sleep at all so it was a bad night for me. I wanted to call Grant, but it was past midnight. I ended up emailing some friends to please pray for Natalie.
Thanks to some special prayers, today was a much better day! Natalie woke up happy that it was Thursday Bingo. She loves Thursday Bingo day. Although we were both still worried about the outcome of her xray, it couldn't take away her excitement about Bingo. To make things better, she got one of her favorite nurses today. It was a pleasant surprise because Robin does not normally work on Thursdays.
The doctors finally made their rounds at 10:30 am, and delivered good news as well. Since Natalie's line is still in the central area, the line is still good. No need for another surgical procedure to fix it! We were happy. Natalie was relieved. In her own words, "Whew, that was close." They sent a surgeon up around 3:30 pm to confirm it was okay. No more wrestling with Sean for Natalie though. We do have to be more careful with the line until her treatment is completely over and pray it doesn't move any further away from the central area where it was placed.
Natalie also got another special surprise today. Robin surprised Natalie by making a special visit to Bingo while it was being aired live. Natalie was focusing really hard playing Bingo from the tv in her room when Robin popped up on tv and called out, "N is for nurse and for Natalie". That put a really big smile on Natalie's face.
Natalie's Bingo prize? Another stuffed elephant. And it sings, flaps its ear, and moves its mouth. She named it Elloso. So, she now has twelve elephants: Elley, Ello, Eleanor, Elleyina, Ellojo, Ellloro, Ellatina, Ellafuss, Ellaney, Eloise, and I can't rember the last one. She loves elephants. Who wouldn't? They are so wise, brave, and hardworkers. There is a story behind how she got each one, but I'll save it for another day.
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