Emily is back to %100 chemo dose.

After about a 6 week lag Emily has been cleared to go back to %100 chemo dose, since her ANC was over 1000, at 1039. You can see that it was barely over so it's really important that she attempts to avoid sick people and to wash her hands like crazy. Both Tracy and I have really been pushing the hand washing, sometimes having the girls do it for no reason. We also mix sanitizer in there from time to time.

We were hoping that Packard would have the H1N1 vaccine today, but they are still waiting. I hope they get it soon, I really want Emily to get it. I've been following it on the news and they expect it to peak next week. Luckily her school hasn't had any out breaks of it yet.

This weekend is a big one. Friday is Emily's actual birthday ! She is really excited about her birthday this year, and she is so much healthier than last year so we are trying to make it as special for her as we can. Her class is already having a Halloween party that day but Em still wants to bring donuts, so she's going to. On Saturday some good friends of ours are having a Halloween Party which we are going to go to during the afternoon, and then come home to our neighborhood for trick or treating. Emily and Haley are super excited about trick or treating. Emily is going to be a Ferry and Haley is going to be a Witch. On Sunday is Emily's birthday party which is going to be a ice skating party in the afternoon. It's going to be a long and fun weekend, and of course full of sugar.

(Wahoo fish Taco will give your kids a free meal if they give them all of their Halloween candy. Not a bad idea.)

remain at %75

Emily had another week of good lab results. Her ANC was around 2600 so that means she will stay on %75 dosage again this week. Her protocol says she can only step up every two weeks after a reduction, so this is exactly the news we wanted to hear. When Emily changes her dosage of ANC she gets a rash on her face, we've noticed it three times. She had it again this recent reduction in chemo, it isn't anything to worry about. There really isn't anything remarkable going on in Emily's treatment. We just are trying to avoid crowds where there could be sick people.

Emily is getting ready for her birthday party. She is going to have an ice skating party and she is really excited about it. She has only ice skated once at a Brownie event but she really wants to do this and she is really excited about it.

great labs again

Emily had her weekly labs and her ANC has bounced back up to 3200. That's good considering her %50 dosage. Now she will go up to %75 dosage for this week, and hopefully the following week. After that, and if she can stay virus free, she will be back at full dosage on her chemo. I feel a lot better having her on %75. The whole family has had the flu shot as of today. I was the last one to get it, I waited until they had it at work, so I could get it free. In a week or so Emily should be given swine flu vaccination when the clinic gets their allotment of it.

Another monthly IV chemo complete

Emily had her monthly IV treatment and physical exam yesterday. The exam and IV treatment went very well, she looks good and there were no issues accessing her vein for IV and lab draws. The vein in her left hand is getting harder to access, she has to hold her hand in a specific position for it to work. It is getting scared and hard the nurse said. Good thing we only have 5 of these remaining in her treatment.

Emily has gained some weight again so we are once again increasing her prednisone dose from 13mg x3 per day to 14mgx3 per day, for her 5 day Prednisone flash. The side effects of Prednisone are troubling from minor ones to some possible yucky severe ones. I think of all her medications we see the effects of Prednisone the most.

Her ANC was really low considering she is on Prednisone. Usually on her Prednisone week we see ANC's of 4000 - 6000, this week just 1840. What you can read into that is she is still really battling her virus, or that she is fighting a new one. Her school is a virtual virus incubator right now, and we have been holding her out of school more often, through she is there today. With an 1840 she remains on a %50 dose of her chemo. I think it's going to be a while until she's back on %100 dosage. I'd like to remind everyone to please get your flu shot, wash your hands more often, and stay away from people when you have a cold. Yes I am talking to you.

without going into the details Emily had a really challenging day yesterday. I went to pick her up from Gymnastics and she told me she had spent most of the hour in the bathroom crying. I told her that I thought it was incredible that she was even at Gymnastics hours after being in the hospital for treatment. After Gymnastics she choose to do her homework over watching TV with me, again I was proud of my little girl.

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.

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.

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.

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 !

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.

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.

Blood counts dip

Yesterday was lab day and for the first time in a really long time Em's ANC was under 1000, it was 900. She is mildly neutropenic but they are going to keep her on %100 dosage this week. I am worried that all the exposure to germs at school is paying its toll and I hope she can regain her counts and stay on %100 dosage. She hasn't made it through a 3 month cycle at %100 and she is so close I'd like to see that happen.

Emily is really enjoying school and yesterday started a gymnastics class.

Third grade here she comes

Today Emily had her labs. I wasn't certain how her levels were going to be, since just yesterday she spent the entire morning throwing up. She either had a virus, food poisoning, or maybe side effects of chemo, we aren't sure but she woke up sick and was better by 2pm. Apparently whatever it was had little effect on her ANC, because it was at 2800 today when we got get results from today's draw. That means she remains on %100 dosage and continues to march to the end of treatment and being cured from her disease.

Today was also the LAST day of summer vacation. I personally am sad to see her go back to school, the vacation seemed much too short. At 4pm today the classes were posted and Emily got the teacher she really wanted and was happy about it. On the sad side her best buddies, many kids she has been with since first grade are not in her class. I think it will be a good experience for her and I am highly confident she will make new friends and keep her old ones close too.

I am often asked, "Chris, how is Emily doing academically in school?" I always and correctly say she is doing well and even though she has missed a lot of school, so far she has kept up. To back that claim I have her STAR test results, and Emily tested at "Advanced Level" in both Language Arts and Math. I also want to point out that she had to take these tests the day after returning from a hospitalization for pneumonia and was really sick. This goes to show just how smart of a person Emily is, she has missed a good part of both first and second grades and has been through so much that most can't even relate to, and she still manages to score high in school. I am just totally amazed and want to brag about her.

I can't believe this cancer treatment has spanned 1st, 2nd, and now 3rd grade. Talk about a marathon. Tracy and I want to thank everyone for your support so far, we are almost there, just 6 months to go.

Beach Day

Emily's counts were perfect.

We got Emily's lab results this morning since the lab draw was so late yesterday, her results were "perfect" as they have been for weeks now !

WBC 7.1
Hgb 13.3
Plt 389K
ANC 6000

Her ANC is higher this week you might notice, that's to be expected as this week is Prednisone week, and that's what it does.

Monthly IV Chemo, exam, and quarterly chest x-ray

Today was a big day at the clinic, Emily was in for her monthly treatments. We started her Prednisone this week and she is just finishing up day 2 of 5. This month she had a chest x-ray along with her physical exam. She looked great and her xray was clear. Dr. Link also noted her blood counts have been looking really good.

After her exam, it was time for her IV Vinchristine and blood draw. This was probably the roughest IV we have had in treatment, it just didn't go Emily's way. They had to poke her 4 times to get a vein and they never really got a good draw at all. In the end they were able to give her the medication. Both Emily's hands were used and she will probably have some bruises.

Besides treatment Emily is still enjoying her summer. Swimming as much as she can, riding her bike anytime she can get me to take her for a ride. She is so tan and healthy looking and gets compliments on her "hair cut". She starts third grade one week from today, I can't believe how quickly the summer has passed.

Back home

Our vacation ended last night, we flew from Denver back to San Francisco and then drove back down to San Jose. The second half of the trip was not quite as fun as the first half because Tracy got really sick with a bad head cold that put her in bed for 2 days. We all made the best of it and still managed to have a really fun trip.

After Breckenridge we went to Boulder CO. In Boulder we met up with some really good friends, a couple who I had gone to college with. They used to live in Colorado and were also back in town for a visit before they move to Germany later this month. They have a son 6 months younger than Emily and a daughter a year younger than Haley, so we had a good pack of kids to explore the town. We had ice cream up on "the Hill" and then walked to Pearl Street where the kids played and we eventually had dinner.

Towards the end of that day Tracy started to feel sick, and by the next morning she was officially down for the count. We had been invited to a all afternoon get together in Littleton. I left Tracy with some cold medication and she got some rest in the hotel, and I headed down to the Denver area with the kids. We had the best time. Our friends, the Rasmussen's, were there and a lot of their friends from the Denver area, and everyone had kids, most of whom were 8 or younger, and most of them girls. Tracy was able to sleep all day, and the girls and I had fun into the early evening. We got back to Boulder around 9pm and went to bed. The next day we slept in late. We moved from Boulder down to Denver for a change of scene. Tracy was still really sick and wanted to be in bed. We checked into a really nice hotel with really comfortable beds and Tracy got some more rest. I spent the afternoon shopping with the kids and kept them as entertained as I could in Denver. Tracy started to feel better that evening, with one last day on the trip.

Tracy and I wanted to do something really fun for the kids. We researched and found a place called "Water World" which boasts to be one of the nations largest water parks, it was 64 acres. So on the last day of the trip, which was a nice hot summer day we headed out with the kids to Water World. It was a really fun day and Emily has been talking about it ever since, so it was worth it. Tracy stayed with Haley and did mellow water fun, and Emily was up for pushing her limits on some CRAZY water slides, and I had a blast going with her. At the end of the day we changed from our swim wear into clothes for the plane and headed to DIA to fly home. We grabbed a bite to eat and all sat together on the plane and flew back home.

Today, our first day back I was worried about Emily's lab tests. We had played so hard, and she had been sharing a hotel room with Tracy who was really sick, 2 plane trips with potentially sick people etc. We had been in the altitude and she was just plain worn out. Well, I think a week in Colorado must be good for you, because her ANC today was up to 1600, 600 higher than the day before we left.

Big fun vacation day.

The vacation is going really well, everyone is in a great mood and making the best of our time. Yesterday we didn't get much done, it was in fact the coldest July 30th in recorded history in Denver, and up here in Breckenridge. There was fresh snow on Mt. Baldy and the Continental Divide that the 10 Mile Range. It also rained mixed with thunder and lightning. Despite that picture we still had a great time poking around downtown Breckenridge. The girls found sweatshirts and T-Shirts they wanted to get, and Tracy and I did some window shopping. The sun was actually out when we were downtown. We had to reschedule our horseback ride to today. We just had a good family time together all day. In the evening Emily and I went in the hot tub, and after dinner the whole family did a mile long walk to a park and the girls played on the playground. Despite it being 25 degrees lower than the average for this time of year everyone was happy with the day.

This morning we woke up to sun, mixed with clouds. We wanted to make the best of the weather, so we made breakfast and headed up to the Breckenridge ski resort area. During the summer they have all sorts of outdoor activities. They have a maze, trampoline, mini golf, etc...but what we were there to do is something called "Alpine Slides" It is basically like a Tobogin (sp?) on wheels on a track. You ride the chair lift up and ride down on a slide. You have a break in case you want to slow down. Emily and I each rode our own slides , and Haley and Tracy rode together. This also marked Haley's first chair lift ride. We all had a lot of fun, it's really exciting to do. Then almost out of no where a rain storm rolled in and we were worried that we may have to cancel our horseback ride. We decided to just "go for it" and it was a really great call. No one else was as daring as us, and when we showed up to the stables, we were the only people who showed up for the ride, and I have to admit I was worried it was going to pour, it was lightly drizzling. Well the opposite happened, about 50 yards up the trail the sun popped out, and we were off on a 1.5 hour trail ride up into the Rocky Mountains. Emily led the way on her horse named "Biscuit", I was on "Captain" and Haley and Tracy took up the rear on "Rudy". I was nervous at first, Emily was really on her own on the horse, but she did REALLY well. These were trail horses who were trained not to run, and to follow the trail. There are usually 15 maybe 20 people on one of these rides, and it was just our family and the guide, on a perfectly sunny afternoon ride. If you have ever skied at Breckenridge we essentially rode up Peak 9. We didn't ride up the ski slopes themselves but off on trails in the trees, it was exceptionally beautiful with green grass, quakeing Aspen trees, and tons of wild flowers along rushing mountain creeks. The ride lasted about an hour and a half as promised and we headed into town for another round of shopping and an early dinner so we could get Haley to bed early. I don't feel sore yet, but Emily and I are going into the hot tub again a little later on.

Tomorrow we pack up and head down to Boulder. We have decided that we want to come back to Breckenridge next summer, but that time we want to do a full week up here.

I was interested in what was going on a year ago, so I looked at some posts I did in the blog one year back. Last year today, Emily had a 100 degree fever and was too sick to be admitted for high dose methotrexate treatments, and then on August 4th was hospitalized for treatment. It's a point I keep making in the blog, but I am blown away by the stuff we are doing this these days when last year we were just struggling to get through each day. I think it was harder to go through than I could ever have really explained in the blog. I also wanted to keep the blog positive so I could stay positive back in those days. Today just seeing the smiles on Emily and Haley's faces during the horseback ride was enough to keep me going for a while.

We got here, 9600 ft!

Today was a big travel day, for our Colorado trip. Last night I flew by myself from SFO to Denver. Tracy, Haley and Emily were using miles and left at 6am this morning. It would have cost me more to fly with them than the flight I took, that's why we traveled out here on different planes. Tracy, Emily and Haley caught a 6am flight out of SFO, made a stop over in Las Vegas, and then onto Denver. I was at Denver Airport with the car already rented. Once they arrived we grabbed our bags and headed up I-70 to Summit County. We are staying in the town on Breckenridge which is around 9600 ft above sea level. You can really feel the altitude.

We are staying in a great house, that I have actually rented before on a ski trip. It is also owned by some family friends of ours. Once we got here we explored the house. Emily and Haley were excited about the bunk room with bunk beds. Em, Haley, and I played a few rounds of hide n seek, this house is pretty large and new to us, so it was actually a lot of fun. The rest of the day we unpacked, shopped for food and made dinner. Tracy and Haley crashed early and Emily and I are up watching a little TV.

Tomorrow we have reservations to go on a 1.5 hour horseback trail ride. Emily also wants to rent bikes, so we will probably do that on Friday.

We are all having a really good and fun time.

Emily is cleared for the plane

Today Emily had her labs a day early so we could leave for our vacation to Colorado. she isn't going to need a lab draw for 8 days which we think is the longest she has gone without a needle since we started treatment. We will be in Colorado for the week, half the time up in Summit County in Breckenridge, and then had the time in Boulder, where I went to college.

Emily's lab results were good, her ANC was only 1080 but high enough to get on a plane. We hope she doesn't get sick while we are on our trip, but that is just a risk we live with daily.

Hopefully I'll post some pictures from the trip this week on the blog.

Emily's lab results were great !

WBC 4.3
Hgb 11.4
Plt 408
ANC 3090

This all means she continues at %100 dosage.

What didn't Emily do this past week?

Emily had her labs late this afternoon. It was so late we don't have the results back. I think she's going to be OK based on the way she is acting, but she thinks she is feeling a cold start to come on. Once I know the results I will make a quick post about it.

This week Emily was up to a lot. Just last week she was feeling sad about not being able to do some of the things other 7 and 8 year old's are doing, specifically swimming and riding a bike. She wasn't very accepting of the excuse we offered her....that she has been in the hospital and in therapy every week and there hasn't been time. She just wants to be "normal". This week she made tremendous progress at "catching up". Over the weekend Tracy, Haley and Emily went up to Auburn to visit Tracy's parents. They have a really nice home in the rural part of Auburn and one of the more exciting parts is the swimming pool on the property. The pool actually belongs to Tracy's Aunt, who lives next door to Tracy's Mom. Emily and Haley swam a lot over the weekend and Granpa Steve taught her how to dive, and also jumped off the diving board. She also treading water in the deep end of a pretty deep pool. As if that wasn't enough to convince everyone she could swim, the other day she passed "the deep end test" at her friend Julia's swim club. The life guard makes sure kids can swim across the pool.

Then tonight she learned how to ride her bike with no training wheels. It took her about 30 minutes (not exaggerating) to learn how to ride. Now she's really excited to do it more. Luckily we are going to Colorado next week and can rent and ride bikes in both Breckenridge and Boulder.

I am really happy she's doing these things. She look so healthy, she is more tan than I have ever been in my life, has curly bleach blond hair. It is hard to forget she is still on chemotherapy.

Another monthly chemo.....DONE

It seems like time is flying because today was Emily's monthly IV chemo. She is also on her 5 day course of Prednisone. So far she is reacting reasonably to the Prednisone. She seems a little more irritable than normal. Things went well at the hospital today. Her exam was unremarkable, in fact we talked to the NP more about what is going on in our lives, than talked about Emily's specific issue. She's doing well, still is the main point to take away.

Her IV stick was a little rough at first, the nurse didn't hit the area that the patch had numbed. It was ok though and they were able to get the IV in to take blood out, and to put Chemo in. Emily stared at the TV most of the time through the procedure and didn't even realize she was done when it was time to go home.

I get exhausted on Chemo day but not Emily, she's off to the pool AGAIN.

8 more IV chemo sessions and she will be complete with Chemo. I almost don't want to say this because I seem to jinx myself from time to time, but I can see the end finally, wow.

4th of July fun and wonderful lab results

Our camping trip over the forth went really well. The kids had a blast and Tracy and I had a great time too, though the kids exhausted us. We were at Big Basin up in the Santa Cruz Mountains. If you like to camp and haven't been there I highly recommend it. The camp sites were nice and the bathrooms were clean and had showers. We were out for two nights which was nice because it takes a long time to setup and take down a camp site. We were there with our friends the Scotts and Emily, Olivia, Haley, and Stella had so much fun together. We went on a fairly long (4mile) hike on the 4th and for the most part didn't need to carry anyone, though Haley and Stella needed some help the last 1/2 mile or so. It was a great way to celebrate the 4th, though there was not one firework to be seen, which was totally fine with us, nice and peaceful and quiet.

Yesterday Emily had her weekly labs. I left work early to take her, to give Tracy a break since she goes nearly every week. I was nervous because last week was our first week back on %100 dosage and I worried that her ANC may have dropped. The great news is that she completely handled going to full dosage and her ANC was at 2400, which is PERFECT for being on her level of 6MP. This means we stay on %100 dosage. She also cleared the tests so she can get IV chemo next week. I can't believe how fast time seems to be flying in between monthly IV treatments.

This week besides labs Emily is getting in some swimming, so much that she is totally tan, which in our family is a rarity as Tracy and I burn. she and I also went to Ice Age 3D last night after the labs. Today Emily, Tracy and my Mom were given tickets to see the King Tut exhibit up in San Francisco at the De Young Museum. This weekend I am going to attempt to teach her to ride a bike without training wheels. That was supposed to be last summers project, but she was so sick it had to be delayed.

She's back to %100 dosage

Today Emily's ANC was around 2600 which means she can go back to %100 dosage. It's been a good 6 or 8 weeks since she has been able to be at this level. We will all be extra good about washing hands at home, and really consider where we take Emily and the risks of being exposed to sick people. This week we will see how it goes and if she can keep her levels up it will be good for her treatment.

Today I was thinking about Independence Day coming up this weekend. It got me thinking about what was going on a year ago. I remember we were going to be in the hospital for an in-patient high dose methotrexate treatment. Those were tough days, I have a picture of Emily on the roof top garden at the hospital, her hair was really thin and she looked much more sick than she does now. She's gone through so much this past year, but also come through so much and thankfully she is responding well to treatments and her body is holding up.

This weekend we are going camping at Big Basin State Park, which is just over the hill from us in the Santa Cruz Mountains off of Hwy 9. We are going camping with our friends the Scotts who we camped with last October. Emily is excited that her "best friend" Oliva will be camping with us. I will be thinking about our independence from the hospital this year as I enjoy the redwood forest.

Lab results were good

Em had her labs yesterday and her ANC was in the 3000's on %75 dosage. This is a really good result, though they are going to keep her at %75 for at least one more week to be sure. All her other numbers were good too. I don't have much else to report at this time.

Great Father's day weekend

Emily finished up her 5 day blast of Prednisone this past Saturday. She did pretty well on it this month. Her behavior was pretty controlled and so was her appetite. She definitely ate more, but wasn't bugging us for junk food the entire time. She seems to be doing well on her %75 dosage and we will know more about that on Wednesday when she gets her labs results. My best guess is that even if her ANC is a little high they will keep her on %75 dosage another week. We had a really nice Father's day. We went out for breakfast, later in the day Haley and Emily each gave me a framed photo of us together. I also BBQ'ed some really yummy chicken for dinner, my Dad's "Super Chicken" recipe in his honor on Father's day.

This week the big news will be lab results Wednesday. I'll update the blog when I have some news.

Great results from the CT and Labs

Today we got the results of Emily's CT she took last week. The great news is she is still in remission. We were obviously happy to hear this. Both Tracy and I had a great deal of anxiety about the results but weren't really telling each other. So it lifts a lot of stress to have that out of the way. We only get CT's every 6 months so it's not something we get used to in treatment.

Emily's lab results were really good too. She is on her monthly Prednisone and her ANC was over 6000. Prednisone makes your ANC increase. Her other levels that we track looked really good too. We are going to increase her chemo to %75.

Dr. Link had a longer exam with Emily than normal, probably connected with the CT scan. About once a quarter we start a new cycle of chemo and this is one of those times. He explained that most likely we are going to stay on %75 dosage for a while because she has had trouble in each proceeding cycle. But if she is looking strong they will look at increasing again.

After her exam Emily got her monthly IV chemo.

This week Emily will finish out her Prednisone and take her daily chemo. We don't have anything else planned medically. She is out of school for the summer and is looking for play dates. We also have a community pool that is really popular with Emily this summer.

CT Exam and labs

Emily had her CT Scan this morning, along with her weekly labs. We have learned through experience now, how to coordinate the lab draw with the IV placement, so Emily only gets stuck once with a needle. Today her Synera patch didn't work on making her numb so the needle stick hurt, but she still did great and they got her blood for labs and prepped her for CT.

For a CT Scan you have to go through Admitting at the hospital, once that was done, you go to radiology where they take you to another waiting room, where Emily could drink her Contrast for the CT. They mix it with Gatorade and Emily doesn't seem to mind. We waited in the waiting room a good half hour, maybe a little longer, until they came in and brought us to the CT Scanner. They must just have one CT scanner at Packard because we have had the same once through treatment. Emily gets hooked up to her IV next. Then I leave, but Tracy opts to stay in the room and wears protection. I did once but don't anymore, there is no need for both for all of us to be in there. The scan itself it pretty quick, and we were done. I don't expect to get results until maybe next week at her physical exam, but we may hear something sooner, you never know.

We got the results of the labs and her blood is looking better. She isn't neutropenic anymore. Her ANC is 1962 as you can see below. We would expect a rise in ANC on %50 dosage and we have it. They are going to keep her on %50 dosage this week.
WBC 3.0
Hgb 12.9
Plts 307
ANC 1,962

Next week is her monthly IV treatment and Prednisone along with an exam from the doctor.

Weekend away

Tracy and I did get away for our "mini getaway" in Las Vegas. It was a good time, we saw a good show, ate some amazing meals, relaxed, slept in, swam a little in the pool. I am really glad we were able to get away and don't regret it, but also being away allowed me to focus on all we have going on, and it was somewhat depressing. I don't think I was able to stop worrying about Emily the entire time, both short and long term about what will happen to her. I am happy we have one more weekend day to all hang out as a family.

This coming week Emily will be having her CT Scan. It's an anxious time for Tracy and I when we have these scans. Hers will be on Wednesday. She will also have a blood draw to check her levels. I hope her ANC starts to rebound on this lower dose and we can start to talk about increasing it in a few weeks.

Emily's levels are still too low, they are going to lower her dose

Emily was neutropenic again this week with her ANC at 490. She has been low for so long now that her NP talked to Dr. Link and he wants to lower her dosage this week back down to %50. Let's hope that she is able to over come whatever virus she has had here so she can get back on track with her chemotherapy at %100 dosage where it really needs to be. Next week she is going to have a CT Scan which I am also really anxious about.

Tracy and I are going away tomorrow for two nights in Las Vegas which we are really looking forward to, but it's mixed feelings for me at this point because Emily is neutropenic, since it increases her chances of being hospitalized. My Mom is going to watch them and for a night, and then Tracy's parents for the next night. They are all capable of caring for her, and want the best, but they also don't know as much about Emily's care as Tracy and I do, so I fret about going.