Wednesday, December 30, 2009

Last IV Chemo of 2009, bring on 2010, we've been waiting for you.

Yesterday was Emily's monthly IV chemo and exam. She gets them every 4 weeks, so technically this is the second one we have had in December, it's just the way the calendar worked out.

Emily's exam went well. Nothing really notable, except she has had this persistent rash for a while and what Dr. Link called "Chemo skin". He gave her a referral to Dermatology and said the order would be expedited so Emily can start treating the rash in the correct way. Since she is on her Prednisone this week, when she woke up this morning the rash was gone, so maybe we won't need the referral? I know at the end of treatment she will temporarily have a lot of skin issues, it's just what happens when you come off her type of Chemo.

Emily has grown, both taller and because of her medication also gained some weight. As a result we have to again increase her dosage. Both her 6MP and Prednisone doses were increased. Unfortunately the Prednisone increase is just enough to bring back the depression she experienced during earlier higher dose phases of chemo. You can really tell this week that she is having a hard time. Last night after chemo she was supposed to have a sleep over at Grandma's house, which is usually a huge reward. She called us at about 7:30 crying and wanting us to come pick her up and bring her home. We did. she even slept in our bed with us, she just wants to be with her parents. I am also worried that with the increased dose of 6MP she may start to experience the nasuea symptoms that you hear about with people on chemo. We have been told she doesn't throw up all the time because her dose is relatively small, but increasing it could change things. I hope I am just worrying too much. And at least we only have 71 days to go.

Hapy New Year ! 2009, was MUCH better than 2008, but we've been looking to March 12th 2010 for about 2 years now, and have high hopes for this coming decade.

Thank you to my blog readers and facebook readers, your support is much larger than you will ever know.

Thursday, December 24, 2009

Labs were great, and we are set for Christmas.

I can't believe it is already Christmas Eve, 2009. It was a year ago that Emily started growing her hair back and we had settled into maintenance chemo. This past year has somewhat cruised by with its share of challenges along the way.

Emily's labs yesterday were great, her ANC was around 2900 which is pretty high but still in the acceptable band. I'm a little surprised because Haley and I have a cold, and I would think Emily will be getting it soon. Though next week is Prednisone and IV treatment, so her ANC will be high again no matter what due to the drugs. Emily will remain on %100 chemo for the week. Next week her IV treatment will be a day earlier than normal because of the holidays, the scheduling at the clinic is a bit off.

We are pretty much set for Christmas. This year not much decorating happened, we were so busy and time flew. We do have a nice tree and have the stockings up, and the girls don't seem to mind that some of the other decorations never made it out of the box this year. Both Emily and Haley are getting some nice presents, and tomorrow we are also going to tell them about the Disney Cruise we are going to go on in the Bahamas at the end of treatment. Including next week's IV treatment, there are 4 left, which means just 17 weeks to go, or around 75 days!

Wednesday, December 16, 2009

Back to full power

Emily's ANC was up in the 2000's for today's lab session, that means she is finally back on %100 chemotherapy dosage ! This is what we expected and its always wonderful to hear positive news. With winter break coming up maybe we can keep her virus free for a few weeks? Though she is going to the Sharks game with me tomorrow night and there is sure to be some exposure there.

Tonight Emily, Tracy and Haley went on a horse drawn carriage ride through our neighborhood to see the holiday lights. Our neighborhood has been doing this for the past couple of years. They had a really good time and Santa was there handing out cookies so of course that was a hit. Both Emily and Haley are excited about Christmas. Next week they will be going to the Nutcracker up in the San Francisco, and then I am joining them and we will go out to dinner and Christmas shop, and stay over night in Union Square. We will be spending Christmas Eve at my Mom's. Then on Christmas Day we are are having my Mom and brother over here to our house. Tracy has to work Christmas day starting at 3pm. On the day after Christmas we are all driving up to Auburn to spend a day at Tracy's parents home. It's going to be a big party up in Auburn, Carol and Steve have 7 grand children and they will all be there! I'm sure the other kids are excited about it, because both Emily and Haley are really looking forward to seeing and playing with their cousins.

Wednesday, December 9, 2009

Going strong

Emily is back to herself, the flu is gone, and she is getting excited about Christmas. Today her class walked to a retirement home nearby the school and did a few songs from her performance. Emily seemed to really enjoy doing the show and really liked being with the older folks. I am sure the seniors enjoyed it too. Today was also Emily's lab day. It was the first time in quite a while we didn't have to be isolated because of H1N1, and Emily was allowed to wait in the normal waiting room and have her blood drawn by the Oncology team, who know how to draw Em's blood really well. We got the results in a couple hours and her ANC was around 2200, which was great. Per her protocol she will remain at %75 dosage. If she maintains that ANC level she will return to %100 chemo next week. It's so hard to stay clear of viruses at this time of year for kids, but she's trying.

Thursday, December 3, 2009

Holiday Performance

I will add a higher quality one tomorrow. This was the final song in the performance. The rest of the performance was filled with holiday songs. Also, one of Emily's third grade classmates and our neighbor Alex Zhau played the violin for us, last month he had performed at Carnegie Hall, he was amazing.

Wednesday, December 2, 2009

Monthly Chemo and H1N1 update

Today was Emily's monthly IV treatment in the day hospital and an exam in the oncology clinic. Since she is known to have H1N1 when we get to the hospital we have to check in and then wait outside for a nurse to come clear her for entry and then escort her to an isolation room. The same protocol is followed for weekly lab draws. We had to wait about an hour and a half for some reason in the exam room. We pass the time with Iphones, laptops, and a lot of good humor and sometimes not so good humor. Sometimes when we wait Emily becomes "Dr. Emily" and pretends to give us exams. It's fun to play, but you also learn a lot of how Emily views her care and her disease. We almost never complain to the staff about having to wait, we know that they are probably busy with kids who are much more sick than Emily, and we remember those days all too well.

Dr Link, or NP Karolina, and a student NP all gave Emily an exam. Dr. Link has to really exam her lymph nodes in her throat area and it hurts Emily, he does it so hard that today he left red marks that remained for an hour or so. Her exam itself went great, there were no concerns and we again we assured her CT looked great. Then it was time to discuss H1N1. They told Emily that they were going to swab her to see if she still has the virus. Then they told us something that we were not expecting. Apparently Emily has a mutated form of H1N1, that Stanford Infectious Disease (ID) has only seen in Emily and one other patient. Since there are laws to protect that other patients privacy I don't know anything else other than just Emily and patient X have had this. They jokingly said that Emily was "famous in the ID dept." Dr. Link then ordered a chest x-ray. He said he wasn't too worried because Emily is not symptomatic but also wants to get her virus free. So to sum it up, the last time she was tested she tested positive, which we all knew about, but we didn't realize that it was a mutated form. The other patient that had this was ultimately cured with a higher dose of Tamiflu, so we expect that if Emily is still virus positive she will be put on an increased dose of Tamiflu, and we just hope she remains symptom free. She is NOT especially contagious, so don't worry. She does not have a fever, a cough, or really any symptoms of the virus and she is clear to be at school. They treat her with extra care in the Oncology area because there are kids there with absolutely zero ability to fight anything, the kids waiting for bone marrow transplants for example. Overall we aren't terribly concerned about this, but at the same time it's a bit unsettling to think she has a form of the virus they have only seen once before. We should get the results of the swab in the morning.

After the exam we had the x-ray in radiology. She moved during one of them so we had a re-do. Then from radiology she was escorted to the day hospital on one north for her IV treatment. She turned on "Sponge Bob the Movie" and tuned out. I don't think she even realized the IV needle went in. She was watching the movie, and because we were so delayed the Sinera patch had her hand completely numb. The IV insertion and lab draws went very great, and then she got her IV medication and were done. All in all we were at the hospital for 5 hours today.

This evening Karolina called us with her cbc results. The important part was her anc was 3200 so she can increase her chemo done up to %75. Her chest x-ray was clear too.