Thursday, March 26, 2009

Are her counts 400?

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.

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
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

CORRECTION: Natalie's counts are at 30.

Didn't mean to short-change my girl.

Natalie's counts are at 20.

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.

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.

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.

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!

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.

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.

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.

Going Back to the Hospital Again...


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.