Wednesday, November 26, 2008

Happy Thanksgiving, my 200th post.

It has been a long year, with many ups and downs. I am so thankful to have my family together on this Thanksgiving. Emily has been through so much, and she looks so good, I pray that that continues. I am thankful my Mom survived her Aorta surgery, just weeks after Emily was diagnosed. I am thankful that through all the stress and trials that our family has remained strong and positive.

This holiday and my experience this year also brings a new layer of sadness and awareness to the forefront for me. There are families who are not as fortunate as we are, who have very very sick children in the hospital. I can't imagine how they pull up the strength to be thankful. I pray for them to get the strength to make to through. It's a long and sometimes lonely road. I wish I could help more.

Emily is doing well, we went to San Francisco last night and had a really great time. My Mom, Haley, Tracy, Emily, and I went out to dinner and stayed over night. It was a really fun time for all of us. Today Emily had to go have her labs drawn and her levels were close to what they were last week, which doesn't seem to be alarming anyone. Next week she has her monthly chemo, and we have a CT exam so have a look inside. We are really nervous about this CT since it's the first look in a while and the first since we have gone on maintenance.

15 more months to go.

Monday, November 24, 2008

Donate to fight Lymphoma and Leukemia

We had a great weekend. I arrived home from Tucson in time to join Tracy and the girls over at our friends the Hansen's for dinner. It was a fun time and a great way to start off the weekend. On Saturday morning we all went out to breakfast together, and then went on a family hike. Haley and Emily both really enjoyed being outside on a brisk fall morning. On Saturday night we watched a movie together. On Sunday, Tracy and Emily went to a girl scout tea in the morning, and then we all went over to a friends for the afternoon and for an early dinner. It was a busy weekend but a fun one too.

This coming week is Thanksgiving and we will be going to Tracy's parents house up in Auburn.

Emily has labs this week, and then next week is scheduled for her second IV treatment in maintenance.

I wanted to take this opportunity to give each of you a chance to donate to help fund Lymphoma and Leukemia research. A friend of mine named Mike Golliday is doing the Leukemia and Lymphoma society's "Team in Training" Challenge. He will be riding 100 miles on his bike to raise awareness of Lymphoma and Leukemia. This is a great way to fund research and support Mike. Any donation helps and goes towards a great cause. If you can donate, here is the link to do so.

Thursday, November 20, 2008

One from the road

This week has been good for Emily and the family. Emily continues to do well and is getting more and more involved in regular activities. She still struggles with being bald and some of the side effects of the chemo. for example she doesn't really run correctly anymore, when she does you can tell something is wrong with her gate. But all in all the doctors say she is doing great, and her lab results have been what the doctors want to see. She continues to be on a full dose of her maintenance medications.

This week I am in Tucson AZ, on a business trip. This is the first time I have been so far from the family since Emily was diagnosed. I was really nervous about coming because I was worried that something might happen while I was gone, but I also knew that was irrational and that going on this trip would be a good thing for me (and my company). It's turned out to be easier than I expected. I have been traveling to Tucson for business regularly for the past 11 years and I have a very good group of friends down here, who all have been so supportive of us during Emily's illness. So, it's been great to be here with friends and getting some work done, just like the old days. I just miss Tracy, Emily and Haley so much more than I ever did when I traveled before.

I know with Thanksgiving coming up I have a lot to be thankful for, and that's something I hope you all will think about when you gather with your loved ones this holiday season, remember what is really important.

Sunday, November 16, 2008

Our Week

Emily is doing well getting back to doing the things she normally would be doing. She is more challenged by school than she has been in years past, partly because she missed the first two months and partly because second grade is pretty tough. She is also going to Brownies again and requesting play dates as often as we can line them up. She has plenty of energy and reports to feeling "fantastic" most of the time. This week she also lost her front tooth, one that had been loose for months. The tooth fairy visited the same night.

This weekend Tracy worked so we didn't do much. Tracy is getting her two weekend days for the month out of the way. This morning Tracy wanted to rest, so Emily, Haley and I went hiking in the hills above Cupertino at a place called Panchetti Ranch, off Monte Bello Rd if you know the area. The weather was perfect and we had a great hike. We did about 2.5 miles round trip and I didn't need to carry Haley at all. Emily still has weak legs from treatment so a hike like today was really good for her.

Treatment wise everything is going well. We have been %100 so far at getting every dose of every medication. There are so many pills on different schedules it's hard(ish) to track. We are using Tracy's I-Phone to remind us to take medication with alarms. This next week she will have her blood checked again with a lab draw. She told me today that she didn't even feel the butterfly needle when they drew her last week, it was the anticipation that she cried about. In a few weeks she will be used to it I bet.

Other than treatment this week Emily has school and I will be going on a business trip to Tucson. I haven't traveled away from the family since Emily got sick and I am nervous about being away but I also know deep down things will be fine.

Tuesday, November 11, 2008

Blood draws

Today Emily had her labs. It was the first day they stopped using her port to get her blood. To remind you, she has an implanted port that can be used to attach an IV or to draw blood, it goes directly to her heart. The port is really helpful if you are getting IV medication as often as Emily was, and it's a tremendous convenience to have it for blood draws. Now since she is not getting as much IV medication they want to remove it, because there is always the danger it could cause a blood clot, or become infected. Since Emily has had a blood clot, it makes them want to remove it even sooner.

Emily has been really worried about stopping the port. It means they have to take blood from her arm just like the rest of us, but she still needs to do it once a week. She has a lot of anxiety about the needle. Today Tracy said she was refusing to get out of the car or go into the clinic, and was crying and really scared. The GREAT news was once she got in, they were able to draw her blood on the first try and she did it without numbing cream. They have a guy, I am not sure of his title, but all he does is blood draws and IV starts on kids, and is really good at it. He said Emily has a couple of nice veins to work with.

This all means that she will probably have surgery in the near future to remove the port. We can probably wait until after Christmas, but I'm not sure.

Once we get into a routine Emily can have her weekly blood draws done at an external lab if we want. One much closer to school ideally. That way she'll only need to go to Stanford once a month.

Monday, November 10, 2008

Maintenance setting in

We are starting to settle into the maintenance phase of chemo. Emily seems to be feeling really well, she has much more energy than anyone in the family or extended family for that matter. Treatment is pretty easy, she just has a pill regime that we have setup for her and us to follow and so far no doses have been missed. She is on her 5th of a 5 day course of Prednisone, with 2 more doses today to wrap that up. Since it's just a 5 day course we aren't seeing as many side effects as when she was on it for 35 days. We do see her increased appetite and some depression, the only times she tells me she is sad she has cancer is is on Prednisone or dexamethasone. That shows the profound effects that medication has on a person. This week she will continue to take her 6MP and on thursday take her weekly Methotrexate.

Her hair is definitely starting to grow back, she has a visable layer of "fuzz" starting to come in. She loves us talking about it and making a big deal about it, which we do.

Tracy and I are noticably less stressed, the mood around the house is just better all around. Now is the time where Tracy and I can start to take care of ourselves a little better. I saw my eye doctor today and will see my primary care doc tomorrow with concerns I have put off while Emily was so sick. I also have plans to start to exercise again, which is hard to start but I know will have positive pay offs if I keep with it.

This week Emily has labs, that's it!

Wednesday, November 5, 2008

First Maintenance

Emily had her first maintenance appointment today. She had her vital taken and then she got Vinchristine IV. Tonight we will also start her pill called 6mp, which she will take for the next 18months every day. She will also be taking Prednisone once a month for 5 days, we will start that tomorrow because you need to get 3 doses in each day and today was too late. She will also be taking methotrexate pills, once a week. She has had methotrexate IV and IT before but this is the first time she's taken the oral version of the medication.

I was very concerned and actually really upset yesterday when I misinterpreted the results of her recent labs. Her ANC was over 3000 and her WBC count was really elevated. If she had been on chemo it would have been odd for readings that high. When I asked Dr. Link what he thought of her lab results he thought they were great, he said it means her bone marrow is working. So the results I had interpreted as bad were actually good. Both Dr Link and our NP Karolina were very nice and explained to us that many families go through a lot of stress when they go into maintenance because of the illusion of less care and a big change in routine. I can tell in how Tracy and I have been acting that the stress has been getting to us, but I am also hopeful that we will soon be able to relax and enjoy the milestone that Emily has achieved.

In early December she will have another CT Scan and chest x-ray to have a see what's going on inside. Hopefully in late December she can have her port removed.

I can't believe it's going to be a full month until her next exam ! :-) Go Emily.

Sunday, November 2, 2008

Emily's Birthday weekend

We have managed to stretch out Emily's birthday nicely this year. This week we celebrated twice and next weekend is her party with friends.
On the 30th, her actual birthday, we had a mexican dinner at home that Tracy and I made. We had my Mom over and it was a really fun night. Emily was extra excited about her birthday this year. It was also more special to Tracy and I than it may have been in the past. I was so thankful for a happy girl on her birthday. She worked really hard to make it to 7. We had cake after dinner, Tracy made it and it was one of the best chocolate cakes I've had in a long time.
Friday was Halloween, Emily and Haley had a lot of fun. We live in a great neighborhood for trick or treating, lot's of people out and having fun, but it's very safe and low key. Haley was a Lady Bug, and Emily was Dorothy from the Wizzard of Oz. Both girls were really excited about trick or treating, Haley is just old enough to get it. Tracy and the girls went out while I stayed home and passed out candy, then Tracy came home and I went back out with Emily to do another block.
On Saturday we had a birthday dinner for Emily at a sushi place Emily and I go to for lunch. Since eating out with Haley is a challenge we had her at a friends house. Emily invited her friend Olivia to come with us and to spend the night at our house. Dinner was OK, the service was really poor which is a huge pet peeve of mine, but we had a fun time talking and enjoying the girls. We all went over to our house after dinner for cake and ice cream. We actually had enough cake from Thursday night and finished it off. Emily opened another round of gifts, she seemed to really like all of them. We gave her a new pink razor scooter to replace her old one she had broken a while back. After gifts Emily and Olivia watch TinkerBell which Grannie and Grandpa Steve had given Emily for her birthday. Emily and Olivia set themselves up in front of the TV with an air matress and their sleeping bags and watched the movie. Foolishly Tracy and I thought they would go to sleep on their own, but at mid-night we had to go tell them to be quiet. I don't think it was a great idea to let them stay up that late, but birthday's happen once a year, that's the excuse we used.

On Wednesday is Emily's first IV maintenance appointment, and we will start her pill therapy.