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.

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

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.

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!

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.

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. . .