Wednesday, September 30, 2009

As expected, a week off chemo and Emily's levels increased !

Emily was on hold from her medication this past week. While it's a worry therapy wise for me, it's also just part of therapy. You are on this treatment for 2 solid years and you are going to get a cold or two. Emily enjoyed the break for a few reasons. Firstly we have to give her the Mercaptopurine (6MP) at 11 P.M, which means every night, we have to wake Emily up at 11, enough woken up that she can swallow two pills, or on Thursday nights 10 pills. So, she really enjoyed some solid nights of sleep, she commented on it several times during the week. On therapy she also can't eat any food after dinner, so her stomach is empty at 11, it's very important. This week she got a kick out of having an after dinner snack. This points out simple pleasures we all take for granted. I asked her if she felt more energy or "better" when she was off her medication. She told me that her energy seemed the same, but she wasn't nauseous all the time. To this point I hadn't thought she was feeling nausea but apparently she has been. The Mercaptopurine is the medication that in larger adult doses makes you throw up and not be able to eat, the symptoms we all associate with chemotherapy.

Today was lab day and her ANC had increased from around 340 to 1100. That's still low, but high enough to resume chemo at %50. Starting tonight at 11pm she'll be back on therapy. When her N.P. reviewed the lab results she could see leading indicators in her neutrophils that she is on her way out of this virus. With an ANC of just 1100 and resuming chemo, we need to be on high alert that she could slip back into being neutropenic over the week. But in usual Pepper fashion we're just going to live our lives as normal as possible, minus trips to malls or movie theaters. We could pull Emily out of school but we try to limit how often we do that.

Right now Emily's two top priorities are, planning her 8th birthday party, and what to be for Halloween.

Thursday, September 24, 2009

Update on Em

We kept Emily out of school today with her ANC so low. She didn't mind too much, but it's funny or maybe typical that on days she has to go to school she wants to stay home, and then on days when she has to stay home, she's sulking because she didn't get to go to school. Her teacher, Mrs. Nishimoto dropped by some work after school, so Em didn't miss out on the days lesson plan. It's great living two blocks from school and we are blessed with a truly awesome school, great teachers and administration.

During the day we found out that one child in Emily's class has strep throat and another has a confirmed case of Scarlet fever. (Honestly I somehow thought that didn't exist anymore, but it does). So that data added a bit of stress to an already stressful situation.

Putting all the worry aside, Emily is doing fine, no fever and I think her scratchy throat sounds a little better. And even if she were to start to get something now, she has a day off chemo and I am sure her white blood cell count is increasing, and getting close to levels where we wouldn't need to be as worried. I think I want to keep her out of school tomorrow just to be sure and keep exposure all the germs that just naturally exist in a school.

I think I wrote a few weeks back that she would probably get sick when school started, and sure enough it happened. After a day to absorb the news, I can start to see that it's going to be all right.

This roller coaster ride only has 167 days left.

Wednesday, September 23, 2009

Emily's cold caught up to her, ANC at 340, chemo discontinued.

The cold Emily has been fighting here caught up to her, and today her ANC plummeted to 340, which is pretty neutropenic. We need to stop all chemo and watch for fever and be ready to go to the hospital if she start to get one. Obviously given the flu season starting early this is a pretty big concern. She has not had her swine flu vaccination yet either. I haven't discussed this with Tracy yet, but I am planning to hold her out of school tomorrow so her counts can regain. Next week they will retest her and hopefully we can start chemo again. Taking complete breaks like this makes me very nervous and stressed out.

Thursday, September 17, 2009

300th Blog Post

the Blog has reached another milestone, the 300th post. It's amazing every time I think about how much Emily and our family has been over the past 18 months. I can't believe it has been that long. To me it seems like Emily just got sick a couple months ago. I am so glad to have the blog as a record of what has gone on, and for Emily to have for when she wants to know more about what happened to her.

Yesterday she had her weekly labs, and she was doing great. Her ANC was around 2600 which is right where we would to see it for this week of her monthly cycle. She even has a little cold she is fighting. She seems to be really strong right now !

Wednesday, September 9, 2009

18 Months down, 6 to go.

Today Emily had her monthly IV chemo treatment and physical exam. This month went a lot more smooth than last month. Last time it took them 4 pokes to get a good IV, and today they got her on the first try. The infusion of chemo was uneventful and was over fairly quick. Her exam also went well, again nothing extraordinary to report. This marked the 18th month of treatment, we are %75 of the way through Chemotherapy.

This week Emily is on Prednisone and quite moody because of it. With her recent dosage increase we have noticed more side effects all the way around from her chemo. She's puffier, moodier, and a little less coordinated, all normal side effects for the medication she in on. Haley also has a cold and Emily is starting to get the symptoms we think, so we'll see how that goes as the week goes on.

Today at the appointment I had questions for Karolina, our NP. What about the swine flu? They feel that for Emily the risk of swine flu is no greater than any flu, she doesn't need to get either. If she did get any type of influenza they would give her Tamiflu, which has been quite effective with the hand full of cases they had last spring and already this fall. Once the vaccine is ready, Emily and all the high risk patients in the country will be the first to get the shots. I think the whole family will be getting both swine and the regular flu shot at that time. Karolina cautioned us that it's likely with flu season coming on that at some point Emily will most likely get neutropenic and may have in patient hospitalizations again. It doesn't mean that her treatment isn't going well, even as we get up close to the end, it's just an effect of being on immuno-suppresive drugs.

I also asked her about what happens at the end of chemotherapy. I have avoided asking about it, but I feel like it's time to start thinking about this part being over. For the first year Emily will only have to go to the clinic once a month for an exam and a CBC blood draw. Then every other month the second year, then every three months the third year and so on. At 5 years if she is able to avoid a relapse she would be considered "cured" of this episode. At that point she would be just as likely to get cancer as any of us are at any time. Then she will go into an after care program, and she can access that for the rest of her life if she chooses to do so. The after care program collects data from kids who have gone through chemotherapy, for example they will measure her learning abilities, growth, and other vital stats. They learn valuable things about the long term effects of treatment, and are there to both help the kids who have gone through chemo, and also help the medical community make changes and advances in treatment for people who will be diagnosed in the future. Karolina said, "at some point Emily will have questions about having children", and she will be able to consult with the after care program to learn the latest about what they know about the risks she may have due to her treatment.

Today we also ran into Dr. Kara Davis, who was the Dr. who was on call the first weekend Emily was hospitalized 18 months ago when we started this battle. She hadn't seen Emily in a very long time, and right out of her memory she said "Hey it's the Peppers, how are you Emily?" I am always impressed with the staff and how well they get to know the kids. To much of the staff I am "Emily's Dad" but everyone knows who Emily is, from the pharmacists, to the woman who hands out our parking passes, it's quite common to be walking around the hospital with her and someone in a lab coat passing by says, "Hey Emily". Since she has to be there it's kind of nice for her to feel like she's a big shot, and it's also nice she feels so comfortable there.

Sunday, September 6, 2009

Quick update...

This is Tracy this time, since Chris has been at Burning Man since Wednesday. He asked me to update the blog while he was gone and I kept putting it off/forgetting until now. The main thing we wanted to say is that Em's ANC from Wednesday 9/2 was 1600, which is up from 900 the week before, and that's without decreasing her chemo dose. We were super-thrilled, because we (or at least I) thought that another week's worth of school germs would drop her counts further. But they didn't! Yay! So she got to power through another week of full-dose chemo. Chris was more than thrilled that she was not neutropenic while he was at Burning Man, where he would have no access to the "outside world." If she had been, let's just say it would have put a significant damper on things while he was there.

So while Chris was out of town, my parents drove down from Auburn to help watch the girls while I was at work some of the days. I'm so thankful that they were able to help us out like that. Chris will be home later tonight or tomorrow, depending on how tired he is! Then you will be back to your regularly scheduled blogger.