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.

Emily's Wednesday, still moderately neutropenic

Emily had her labs today and her ANC is still pretty low, around 580 which is moderately neutropenic. That means we have to keep our eyes open for fever ever more than normal. Haley has been sick with a cold, so there is that risk that Emily will get it and then have issues. So far things have been going fine though. She still has some sniffles and a little cough. Overall her attitude has been up-beat and she has been going to school. Today she went on a field trip to the Tech Museum in San Jose. Her class took the light rail to get there, she was really excited about it.

They are going to continue Emily at %75 dosage this week. They are talking about changing her over all dosage if she can't get back to %100 here. They explained to us that Emily has not gone 1 full cycle (roughly a 3 month period) without having to have at least some reduced dosage, so a total reduction might be needed. We are going to hear more about it next week.

We don't have anything else planned medically this week, and will probably take it easy over this coming weekend.

Emily's I.V. chemo went well. 275th post in the blog.

This is the 275th update to Emily's blog. Wow it's been a real journey hasn't it? I went back and re-read the the first two months, and there were some things in there that I almost don't want to remember. Actually I am really happy with the blog, it's given me a chance to express how I feel and to also feel all the support of the people who are following Emily's courageous battle with cancer.

The picture above was taken tonight at Open House at Country Lane School.

Today went well. We had I.V. chemo, labs, and a physical exam. The Exam came first, and Emily checked out on all the things they check her for. A typical exam starts with any question or concerns we have. Then they ask Emily a ton of questions, ranging from how she is feeling to what she is learning in school. Then they get her up on the exam table and they check the sites in the body where we all have a lot of lymph nodes. The neck, stomach area, pelvic area. They listen to her lungs and heart. Then she has to take at least 4 steps on her heals and 4 steps on her toes. The heal and toes exam is to asses neuropathy which the Vinchristine can cause. Early on in treatment you'll remember Emily couldn't walk and needed a wheel chair, neuropathy was the reason for that. It's a side effect of her chemotherapy. Today she checked out fine, like she has for the past several months.

After the exam we get moved into the Day Hospital, which is a part of the ! North Unit. Here is where they take Emily's blood sample and give her I.V. chemo. She has a really good vein on her left hand that we save each month for the I.V. needle. Our nurse did a great job getting her vein on the first try. I think these 1 North nurses are amazing they have to stick kids with needles all day, and they do it so well. The hardest part if accessing the vein and once that is over the blood sample and Chemo go really quick. Today we hung around about 10 minutes after the I.V. because Emily got a visit from a dog that was in the clinic today to help brighten up the kids day. When the pet therapy animals are on site, you can sign up for a visit, which we had done.

Stanford/Packard are really quick with the lab results, the Cancer ward has their own lab which really expedites things. By the time we drove home we had a voice mail with the results. Emily's blood levels were good and they moved her from %50 dosage up to %75 dosage which makes us really happy! let's hope she can stay away from colds, she really needs to stay on higher doses, that even got brought up at her exam today.

Day in SF

We went up to San Francisco today and it turned out to be a really good day up there. We drove up after breakfast and a slow morning at home. It was around 90 degrees with no wind in San Francisco which is very unusual, it was almost too hot. We took the girls out on a ferry ride to Saucalito in the afternoon, which is just across the golden gate bridge. It was a really nice day to be out on the bay, maybe the only slightly cooler place today, it was so hot. We spent a little time in Saucalito, and then caught the Ferry back to the Ferry building in S.F. We had dinner in the ferry building and made our way back home. The girls had a great time, and so did Tracy and I.


Emily is feeling great and her cough is all but gone. She has a ton of energy, and she's always having fun with her little sister. This coming Tuesday she will start her 5 days of Prednisone. On Wednesday she will have her I.V. chemo and her exam from her doctors.

Emily's lab results and an ask for donations for research.

Emily had her labs drawn yesterday. It was a tough lab draw for her as her favorite phleubotomist wasn't on call. They were able to get their sample of course, it was just hard emotionally for Emily. Stanford does a great job at continuity of staff for their patients so you really notice when someone is missing.

Her lab results were good, putting her ANC near 2500, which is in the range we want it. However remember that's in the range, but only on a %50 dose of chemo. That means Emily is still working on getting over her virus. Per the protocol she needs to stay on %50 dosage for one more week, and then we will step up to %75 dosage for 2 weeks and then finally back to %100 dosage in about a month. It's understandable why they need to keep the dose reduced, but it's also really frustrating that we need to. If you read the literature on being cured and reduced risk of relapse, it's important to be on %100 dosage as much as possible, and the past 2 months she has rarely been able to take that much. As much as anyone tells me things will be OK, I know too much at this point to not worry a bit about this. Next week is Emily's prednisone and IV chemo treatment on Wednesday.

Many of you may have received an email from me this week, for those of you who did please excuse the repeat ask here. A friend of mine is riding the Leukemia and Lymphoma Society Team in Training ride around Lake Tahoe in early June. He is doing it in honor of Emily and I am trying to help him with fund raising. The money raised goes to fund important medical research for Leukemia and Lymphoma. It's important, maybe people in the future won't have to go through what Emily has gone through. I can say as a parent, a %70 cure rate is OK but certainly not high enough for Tracy and I not to constantly worry. Please donate to Mike's cause if you can. We'd love to see some donations made in honor of Emily. Here is the link to donate, any amount you can.

http://pages.teamintraining.org/sj/ambbr09/mgolliday

Emily just deals with it

I forgot to include this story when I posted last night.

Yesterday afternoon I took Emily and Haley to the park to play. They were playing together in the sand pit, and after a few minutes two other girls came up and started playing next to Emily. About 5 minutes later I heard one of them say to Emily with a very mean face, "Your hair looks like a boy's haircut." Emily responded very directly to her by saying, "That's because I have cancer." The girl responded back, "What's that?" and Emily replied "It's a disease I have that could kill me, and the medicine I have to take made my hair fall out, but it's growing back now." The girl didn't really know what to say, and Emily looked over at me, trying to make a smile and shrugged her shoulders and continued to play. A few minutes later Emily was playing with the girls who had been making fun of her.

I am so proud of her for sticking up for herself, and ultimately not backing down and running away, but instead befriended them. I asked her on the way home how she felt about it and she said that the girls had apologized while they were playing and she thought they were nice. I don't think I'd have the guts to do anything close to that when I was a kid, I remember crying because someone made fun of a shirt I wore once, and to think of Emily dealing with being bald and now with short hair is just a testament to how strong of a person she is. I constantly learn from her.

Emily seems to be getting better

It looks like the reduction of chemo, taking it easy, and finishing the course of anti-biotics is paying off, Emily's cough is much, much better. it's not completely gone, but she's not coughing herself to sleep anymore. She finished her medication for pneumonia last night and now is just on her reduced chemo dose. She will be having her blood checked this Wednesday and we will find out if they will increase her dose. Emily is looking forward to getting back to school tomorrow.

This weekend was Mother's day and Emily was really excited about it. She and I went shopping for Tracy on Saturday and Emily wanted to get her a bottle of perfume. This morning we gave it to Tracy and Emily and Haley "helped" make her breakfast. The original plan was to serve it to Tracy in bed, but she got up before Emily so we just had it at the table as usual. Tracy had to work this afternoon and evening so we only had Tracy home for part of Mother's day.

Cough returned vigorously last night, chemo reduced, chest X-Ray

The past two nights Emily hadn't been able to go to sleep because her persistent cough had returned, and it was/is getting worse. This really made Tracy and I concerned that the pneumonia either wasn't getting better, or even worse that something else was going on. Today was her lab day and we insisted that Emily be seen by her NP and or Doctor after her lab draws.

First result from the blood test is Emily is borderline neutropenic with an ANC level of 540, which is about as low as you can get without having to cut chemo dosage all together. Starting tonight she will be a on %50 dosage. That's discouraging because she's been on so many reduced doses in the past 8 week, and ideally patients need to be at %100 dosage. There isnt anything we can do about this, but hope she starts to get better so we can just be on full dosage for the summer. From here we will probably be on %50 dosage for 2 weeks, then %75 for two weeks and then finally and hopefully back to %100 dosage. It worries me that this keeps happening.

After her labs she saw both Dr. Link and Karolina or NP. She sounded clear but they wanted to do a chest Xray to see if the pneumonia was clearing up. What they told us was if the pneumonia had gotten worse, or was the same as it was in the ER the other week, they would probably switch her to another antibiotic. However, the great news was her pneumonia was much smaller than it was a week and a half ago when we were in the ER, so the antibiotic is working. Her cough is just something we need to live with, and try not to worry about. Given the extra exam and chest Xray, Tracy and I can both rest assured that she's OK.

My opinion is the cough is related to the pneumonia but since she dropped to near neutropenia her defenses are too weak to fight the cough, so reducing her chemo SHOULD help with the cough and allow her immune system to kick the pneumonia and cough to the corner. Let's hope that happens. So while it's hard to reduce the chemo from a cancer point of view, it's probably a good thing holistically. It's all related. Blood cancer is so tough to manage, isn't it? I haven't talk with Tracy about it, but I think we may want her to stay home from school at least for tomorrow to get her levels back up.

Emily is back in school, getting better every day

We thought Emily's cough is to the point where we could send her back to school today. She is only coughing at night, and even then it's getting less and less frequent. She had some apprehension about going back today after a full week off, but once she got there, I am sure she is doing fine.

Her energy level is pretty good, however she and I went for a walk to the shopping center on Saturday for some coffee and hot chocolate. On the way home she had to stop and sit several times. I do this walk with her a lot and it was unusual for her to take so many breaks. Then about 20 minutes after we got home she came to me and said "daddy remember you asked me to be honest with you if I am ever not feeling well?" to which I said "yes, sweetie what's wrong" and she said, "I am having a hard time catching my breath." I was worried but since I knew she had pneumonia, it was probably the reason. She also complained about cramps on her left side, which I also nervously passed off as the pneumonia. Her cramps come from time to time, and really scare me every time she reports them. The reason they scare me is before she was diagnosed she complained of really bad cramps, which looking back were the formation of her tumors. Cramps can be normal, so it's one of those things that I try not to worry about, but knowing what I know, it's hard not to.

This week she will have a lab draw on Wednesday and right now that's the only thing that is scheduled medically. She remains on %100 dosage of her Chemo.

Emily is still doing great

Emily has been home from the hospital for 2 nights now and she is still doing great. In fact she has bounced back to her normal self almost completely. Her cough still remains from time to time in the night, and last night she coughed so hard she woke us up, but after some water and a little talking she was able to go back to sleep. Tracy was a little concerned about the cough so we called the clinic today to report it, but they assured us that Emily was on the right dose and this would just take a little while to clear up. When the cough is all gone she can go back to school, hopefully on Monday but we'll just have to wait and see one day at a time. During the day the cough is pretty much non existent though, which is a large improvement over the past several weeks. Looking back, she had had the cough for a while leading up to the pneumonia diagnosis. She is really bored having to stay at home and wait this out. Even though the swine flu is very over blown in the media, any flu is bad for Emily so we are keeping her away from crowded places for that reason too. So on this rainy day it would have been fun to go to a movie, but a movie theater full of people is one of the last places you want to be if you want to avoid a virus.

Last night Tracy and I went out on a "date" while Grannie and Grandpa Steve stayed home with the girls. We had a really fun night out together, having some drinks and then a nice slow dinner up in Mt View. Tonight will be the first night in many that we aren't going anywhere and all the family is home, which is really nice too. It's the first time in a long time on a Friday night I am looking forward to doing absolutely nothing.