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.

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!

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.

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.