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.

The amazing Emily beats the odds again

Emily was discharged from the hospital early this afternoon ! She is feeling, looking, and sounding much better than she has in a while. Her pulse has normalized, her fever is gone, and her cough is much better. The cough is still there but it's so much better than it was leading up to the pneumonia diagnosis. Emily is going to be on antibiotics for 10 more days (I think) and will restart chemo tonight at %100 dosage. Today her anc was down to 2000 from 7000 yesterday so her white blood cell count is back in the range we like to see on therapy. The orders are for her to take it easy until next Monday and then she can likely go back to school. Given this swine flu scare/epidemic we are going to watch her exposure to sick people the best we can. Swine flu gives symptoms like viral pneumonia and having that on top of bacterial pneumonia wouldn't be good, to say the least. She ate dinner last night, really the first food she had had since Sunday, so that's a great sign too.

Tracy and I are so grateful for all the support you all have given us these past few days. We were really scared when this first happened and she ended up being hospitalized, every time we go through something new, the stress level is extra high and knowing people are thinking of us really helps.

I am working today so that part is back to normal. Both Tracy and I are really sad we are missing our trip to New Orleans, we would be in the air right now, but we know we made the right call staying home.

I am sure Haley will be happy we are all home too, she's been all over with different people watching her the past few days and while she can't express how hard it is on her, we know it is, and having big sister home will make her extra happy.

I will keep you all updated more regularly over the next few days as this pneumonia chapter resolves itself and we are back to our boring every day lives.

thanks again

Things are looking up, really likely a discharge tomorrow

They are preparing Emily's discharge papers, and baring a turn for the worse she'll be out tomorrow and even resuming her chemo. The main reason for keeping her was the high fever and low O2 saturation levels in her blood. The O2 saturation is already back at an acceptable level, %97 (she is usually %99 or %100 but yesterday was at %90), and her fever is going away, the last temp read was 99.7 degrees, so a tiny bit elevated but lower than the threshold for keeping her, as long as it doesn't spike again, it's very likely she'll be sleeping in her bed by tomorrow night ! At this point I plan to sleep over in the hospital with her tonight and head right into work from there, and meeting the family when I get home.

I am home for a nap before heading back in for tonight.

I am feeling much better that she's going to be back on track very soon. Emily is SO tough, I know she knows she's going to be fine, it's Tracy and I who worry most.

Talked with the doctors

The Oncology team made their rounds later this morning and I had a chance to meet with them and talk about what's going on with Emily. The good news is once she breaks her fever she can go home, and we are all hoping that will be tomorrow. She doesn't need to have a clear Chest X-Ray to be discharged, the Doctor explained that the chest X-ray will lag behind the actual progress of the cure, so in 10 or so days hopefully she will have a clear Xray. She will likely resume chemo tomorrow and be sent home with oral antibiotics. We are all cautiously optimistic it will happen.

Today my Mom came by for a visit with Emily which she liked very much. Since Emily isn't a big fan of hospital food, my Mom is going to make her some Mac and Cheese and a an Artichoke and come back down around dinner time to bring her a home cooked meal. Our good friend Erik brought her some Jamba Juice which Emily really likes and she's enjoying that now.

They haven't taken her temp in a while but she feels much cooler than earlier so maybe this is starting to break and the pneumonia is getting kicked out of her system. She also seems to be coughing a little less, but you can still hear "gunk" when she does.

thanks everyone for the positive thoughts for Emily and our family.

Tuesday's update from Packard

Emily is still in the hospital, and this morning had a fever of 103. They are treating the fever with some Tylenol and she is a little more comfortable with it and the fever lowered to 101 after taking the medication. We got some results from tests yesterday and we are happy that she tested negative for RSV and Swine flu. We were a little worried since we had been in San Diego the US epicenter for this swine flu outbreak that she may have contracted it, but at least we don't need to worry about it, for now. She is still on 2 antibiotics for Pneumonia and I thought she looked a lot better when I arrived this morning, much less red in her face.

She is in a total isolation room, meaning anyone who visits or comes in to treat her has to wear a mask, and the medical staff wears an extra gown. She also is unable to leave her room, so she can't go up to the play room or go on walks. The play room staff knows of this so they sent someone down to bring Emily some art supplies. She is pretty much just sitting around and watching TV with lack of much else to do. She keeps telling me she misses school, especially Math, so we are going to have her teacher drop some school work by our house for her. It makes me so happy she actually misses doing school work, cause when I was a child I would have done anything not to have to do it. She's just a fighter and am amazing girl who is making the best of her situation and wants so much to just live a normal life, I wish she could.

Today I think the plan is to just be medicated and to wait until tomorrow and do another chest XRay to see if she can go home, but I am not certain they may do some tests today, I haven't seen a doctor so far. The nurses are all the same as when we used to spend much more time here, so at least they are all familiar faces and everyone LOVES Emily so they stop in to just say hi, even if they aren't assigned to her directly. If you have to go through this it's nice to have friends on the inside who care about your child. Packard is really a great hospital, even though some people like to slam Stanford, I think if you are ever faced with something serious you'll gain a new level of respect for the people who work here, even if you have to deal with some B.S. from time to time.

Last night when I went home I felt really sad, I don't want to be overly dramatic but I can't help but worry about what's going on here and I am fully aware of the seriousness of the situation. I feel much happier being here with Emily, so I can care for her and be part of what's going on, it gives me less time to think of "bad" outcomes. Today I am staying with Emily while Tracy gets some sleep at home. this afternoon Tracy will come back for a few hours, and then I plan to sleep here with Emily tonight. One GREAT thing about the new Oncology floor is private rooms and a full sized bed for the parents ! No more "sleeping chair" hell. I have two laptops so I leave one here and one at home so I can stay connected. While Emily watches TV I blog, Facebook, or just surf the net.

I will update this afternoon or evening.

Latest Update : They are keeping her for at least 48 hours.

After a roller coaster night and morning they finally decided to keep Emily in patient here at Packard for I.V. antibiotics and observation.

This all started last night around 2:30 in the morning. Emily woke me up and told me her tummy "really hurt". I could tell by the way she looked that she was going to throw up so I helped her into the bathroom. She threw up and we all went back to bed. We had given her chemo around an hour earlier and thought it was just a side effect. Then around 3:30 am she woke us up again because she needed to throw up. This time Tracy observed that she had a fever. We were concerned because we had been in San Diego about a week ago, and that's where the swine flu had spread so we were worried she could have swine flu. We called the Oncologist and she told us that if we were worried we could come into the E.R. for a work up, so Tracy and Emily came in, and I stayed home with Haley. I will be honest that I really didn't think anything was going to be wrong, because our last few trips to the E.R. have been uneventful. Around 6:30am Tracy called me to tell me they had diagnosed Emily with Pneumonia, about the last thing I expected to hear. She had a fairly large area effected on her left lung on the lobe. I kicked things into gear and made arrangements to drop Haley with my Mom so I could join Tracy and Emily at the E.R. Just after I dropped Haley off with my Mom, I got a text message from Tracy saying they were going to give her I.V. antibiotics and send her home, so it was sounding like it wasn't going to be as serious as we thought. I guess it would be around 8:30 am at this time. Then between 8:30 and 10:30 the doctors were going back and forth about whether she would be admitted or was going home. Her sugars in her blood were low, her potassium was high, and her O2 saturation was on the low side. All of these factors plus the pneumonia ultimately made them come to the conclusion that she needed to be admitted for 48 hours. So, here we are in 1 North at Stanford in an isolation room.

As nice as the new Oncology floor is, we really hoped to never have to be in-patient in it. It is nice, all the rooms are private and Emily is feeling pretty well, all things considered. Since she no longer has her port, she has an IV and is having to deal with additional needle sticks, but she is being very brave and it's going well. Right now as i type this she is eating Chex Mix and watching Zach and Cody on the Disney channel.

Later today the Oncology team is going to do a full exam on her to really assess where we are and how long she may need to stay.

I talked with the Dr. in the hall and asked him what the drill was and what was going to happen. I also asked him if he thought this may be a relapse of the lymphoma. Of course he couldn't say much definitively but here is what he said. First of all it's great news that she is not neutropenic, what that means is Emily has some white blood cells to fight this on her own. She is also on two I.V. antibiotics (Vanco and Ceftriaxone) which they can give large doses of since she is here in the hospital, which should really knock this as well as it can be. He characterized her pneumonia as "fairly large". He said he suspects it is not a relapse of Lymphoma but can't be totally certain, but said since she is in maintenance he really doesn't think it's her cancer coming back. He suspects is bacterial and not viral pneumonia so can be treated with antibiotics. He seemed to be pretty calm about this and told me "it's not uncommon to see this" and his voice cued me to not worry too much.

So, that's where we stand, hopefully she will bounce out of here quicker than expected but right now it's wait and see.

Needless to say, Tracy and my vacation is on hold, in fact Tracy is not going for sure, and I am pretty sure I need to cancel as well. We were going with a group for a friends 40th birthday and that's the only reason I am even considering still going, but I know I would worry the whole time, and if Emily weren't getting better I would kick myself forever for not being here.

Last update until we know more

They keep going back and forth about if she needs to stay in the hospital or not. She definitely has pneumonia, a pretty large on on her left lung lobe. She sugars are also really low, and they are not sure why. She also has low O2 saturation, meaning she can't get enough oxegen on her own, it's borderline. So we are letting the doctors in the E.R. work with the Oncology team to determine what we do. Tracy and I would prefer they keep her over night but we'll see what they decide. Since the news keeps changing i am going to wait to blog until we know a lot more.

Emily will not need to be admitted

I am here at the hospital and they have decided that since Emily is not neutropenic they are going to give her I.V. antibiotics and then send her home with antibiotics for home. This may not be AS serious as we were thinking.

Emily was diagnosed with Pneumonia early this morning.

This is still developing so I don't have many details, but Emily woke up throwing up around 3:30 this morning. She also has a fever and a mouth sore. Given all the scare about swine flu and having just been in San Diego we brough her into the hospital.

While I was typing this Tracy called me to tell me the chest xray says she has pneumonia, which is VERY serious. I am heading into the hospital to be with them. She will be admitted until she clears this. I am so scared.

I don't think we are going on vacation this week.

I have eased my worry

I talked with Emily's NP today and she told me she isn't concerned about the high counts this week. So, I will stop worrying as much about it. you could tell in my post last night that I was obsessing on her WBC count, but with Prednisone I am told they see these high levels now and again.

thanks for the kind messages that you sent with concern.

Moving onto positive thoughts and looking forward to the weekend.

strange / troubling results from Emily's labs

Today Emily had her IV Chemo at the hospital. She also had her physical exam, which was pretty normal. Emily may have pink eye so they prescribed her some eye drops to knock it out. She also has a persistent cough, but it seems to be all in her upper respiratory tract. She still has some fluid in her ears too but the infection seems to have gone away. After her physical exam she got her IV chemo and blood draw. It went really well. So the hospital part went well.

The troubling results are the lab results. Emily's white blood cell count was really high, at 9.3 and as a result her ANC is 9000 which is through the roof. Why that is, is unknown and troubling to me. Her NP said it could be because of the eye or the cough. Prednisone also raises white blood cell count and ANC levels too, and she's on her Prednisone this week. It's a bad sign if ANC is really high, so I am worried that something else is going on. It's scary when something new happens, sometimes it means nothing and sometimes it is a real concern, I just don't know which this one is. This is only me worrying and nothing the doctors said this week, I just know what the levels should be and know this is way out of range. We won't really know until labs next week, so I will be concerned all week and just hope that next week the levels come down to a more normal level, which is around 2000. They also increased her 6mp dose to help suppress her levels. I hope I am worrying for nothing but wish I didn't need to at all.

This week we don't have much going on, just resting after last weeks vacation. Next week Emily will have her labs on Tuesday and Tracy and I plan to go on a vacation to New Orleans on Wednesday and the kids will be staying here with their Grandparents. I hope her levels return to normal so we dont have to worry while we are gone.

What a difference a year makes

We just got back from our spring break trip to Southern California. It was a really successful and fun trip. The first half I already wrote about which topped off with Emily getting to meet Miley Cyrus. The second half of the trip was spent in San Diego and we had a great time. We were with some friends the whole time who also have kids. In our group we had a 1,2,3, and 7 year old, so there wasn't much rest for the adults. We went to Sea World, Lego Land, and spent a day kicking around the pool and sea port village on mission bay. The weather was perfect, mid to upper 70's during the day and nice and balmy in the evening. The only bad part of the trip was the drive home from San Diego to San Jose, I think we found every traffic jam on the way up, but that's really not bad for a weeks worth of fun.

We were remembering last year and Emily was too sick to do anything but lay on the couch and watch me play video games during spring break. I can't say it enough, I am so amazed at how well she is doing and how resilient she is and how positive about her future she is. It really makes me enjoy our time together even more. It's almost sad to admit that but it's true.

This week is Prednisone and IV Chemo treatment for Emily on Wednesday. She is still on %100 dosage and we expect she will stay there when she has her labs on Wednesday. She will also be getting her monthly physical exam from Dr. Link.

Once I have a few minutes to get things organized I will try to post some new pictures from the trip, probably on Wednesday's posting to the blog.

Hannah Montana Day

Our trip is going really well. We drove down to the L.A. area and stayed in Santa Monica on the beach, from Monday through today (Wednesday) this week. It was a little colder and more windy than we hoped, but we've had a great time. On Monday night we met up and had dinner with my brother Nick. On Tuesday we played around at our hotel which was on the beach in Santa Monica. The girls swam in the pool, and Emily and I did a 3 hour hike on the beach, walking from the Santa Monica pier all the way to the Pier in Venice. We had a great time. On Tuesday night we went over to Tracy's sister Leah's house and had a nice family get together. It was Leah, Patrick, Nick, the 4 Peppers and Tracy's Aunt Sheila, Uncle Ed, and cousin Windy. Leah and Patrick live in Burbank and have a really nice home for entertaining, it was a fun night. On Tuesday morning we also had to have Emily's lab drawn and we went to a UCLA clinic to have that done, it was much easier than we expected.

Today (wednesday) was a really big day for Emily, she was on the set for Hannah Montana, the Disney series which Emily is a big fan of. My brother Nick works for ABC TV and pulled some string to get us on the set for what they call a "Run Through", which is essentially a run through of the script with all the cast, producers, directors. We were the only non-cast and crew members on the set. We left Haley with Uncle Nick so she wouldn't be a distraction. We watched them practice an entire episode on the set, which they will start taping tomorrow with a studio audience. Emily got to meet all the cast members and sit with the directors and watch them practice. After they were done we got to walk around the sets and take pictures. It was really fun, and I'm not even a huge fan of the show. All the directors and cast were really nice and welcoming. Emily got to keep a copy of the script, Miley Cyrus signed a photo for her and she got some additional memorabilia from the show. She even got to meet Miley's dogs who were on set.

After we were done with Hannah we picked up Haley and are now in San Diego for the next 4 days with plans to go to Sea World and Lego Land.

Easter 2009

We had a good weekend. On Saturday we had a visit from my Mom and my brother Nick. Nick was up from L.A. and we will be seeing him tomorrow when we go on our trip to Southern Cal. Tracy's Mom also came to join us on Saturday too. Today all 7 of us got together for an Easter brunch later this morning. It was a nice relaxing weekend. Emily and Haley were visited by the Easter Bunny last night and opened their baskets this morning. Emily got a chess set which she was excited about. The girls also had an egg hunt. Tracy had to work this evening, but is getting off early at 7 instead of 11. Tomorrow we head off to Southern California and will be back in a week.

Happy Easter.

Emily is excited about our trip.

Before I get to the exciting news, an update on Emily's health. She either has a really bad cold or a small ear infection. Today her Oncology team decided to prescribe high dose antibiotics just in case, to knock this thing out. She still has a low grade fever and a lot of pain now in her ears. Her NP examined her and saw a little pink in her ear which could be an infection. When I went to pick up the amoxocillian the pharmacist said she questioned the dose because it was so high, we called the Dr. and in fact the dose was correct. So if this is an infection I imagine it will be knocked out quick. Since her ANC is high maybe this isn't a virus? She remains on %100 dosage of her chemo and since she isn't neutropenic she can have Tylenol, so we are doing what we can.

This Sunday is Easter and we will be having my Mom and Brother over for brunch and for the egg hunt.

Next week we are going on vacation. We are driving from San Jose to Los Angeles. My brother lives there and so does Tracy's sister. When we are there we are staying in Santa Monica in a very nice hotel right on the beach. Tracy and I have stayed at this place before with Emily when she was about 2 years old. We are going to hang out with Uncle Nick and Aunt Leah and Uncle Patrick. On Tuesday we are planning to rent bikes and ride along the coastline which should be fantastic. On Tuesday night we'll be going over to Leah's for a nice dinner with family. On Wednesday my brother Nick, who works in production for ABC TV has setup a really special surprise/treat for Emily. We are going to get to go on the set of Hannah Montana and watch them do a walk through for the TV show, probably Emily's most favorite TV show. She is SO excited about it. When I told her today after it was all confirmed she was so excited she teared up with excitement. What she doesn't know is she is actually going to get to meet Miley Cirus / aka Hannah Montana and get to talk with her. It's going to be really exciting for Emily, and while I am not such a Miley fan, watching Emily's excitement will be priceless. We are so grateful and appreciative to Nick for setting this up for us. After we watch the show taping, we will be leaving L.A. and heading to San Diego for 4 more days of vacation. While we are in San Diego we are also staying on the coast. We are meeting up with our good friends the Leary's from Tucson. David and I work together at Intuit. The Leary's have 2 kids, so it's going to be fun to get together and watch our kids have fun. We plan to go to Sea World, Lego Land, and also have a day at the beach. On Sunday we'll be driving back home.

We are looking forward to this trip. Emily will need to get labs drawn while we are on the road and we have found a lab in L.A. where we can get that done. This is the longest and farthest away we have been away from home since Emily was diagnosed. It's a victory for us that we are able to do it.

Trip to the ER, with a good outcome

Today Emily woke up with what she reported as a bad sore throat. We didn't think much of it since she has had a cold for a while. This afternoon she told us that it had got worse over the day. I asked her on a scale of 1 to 10, how much her throat hurt, she rated it an 8. So, I took her temperature and sure enough she had spiked a fever of 101. To add to this, Emily had been exposed to someone with Strep throat. Given all these signs we made arrangements to have Emily seen in the E.R.

When we arrived at Standford E.R., her fever was even a little higher. They took her right away and did a Strep test and took a CBC and blood culture, and urine sample.

The great news is the strep test came back negative. Her ANC was also over 2000, so she wasn't neutropenic. What she most likely has is a virus with a bad sore throat and fever. We will have to wait a couple days for the more complete strep test to come back with the blood cultures, but it is almost certain that it's just a virus. So certain that the Pediatric Oncology fellow on call, who knows Emily's case told us to continue with the chemo and to give Emily some Tylenol with codine and go to bed. We got home around 10:30 this evening and she went right to bed.

During this whole hospital visit Tracy was working upstairs on C2 and didn't get a chance to come down and visit, but Emily and I stopped back quickly on our way out. Both Tracy and I are extremely relieved that it's not an infection and are both happy we had it checked for peace of mind.

Wednesday Labs are in

Emily's lab results were good, her ANC was 1200 today, which means we continue at %75 dosage. She was either going to remain on %75 dosage or have it reduced, so this is the best news we could get. If she is able to hold above 1000 ANC next week she will return to %100 dosage. I really hope the cold season is over so we don't need to reduce dosage again for a while.

There isn't much going on in the Pepper family to report on the blog. The girls are getting excited about Easter.

Tracy is working more and more these days which is really nice financially, living on basically 1 income for so long was pretty stressful especially in this economy.

March Prednisone flash is over

Emily had her final dose of her March Prednisone flash last night. Today she is recovering from it. She has a hard time coming off the high dose usually the after she finishes. This month she handled the monthly Prednisone better than the past couple months having fewer food cravings and mood swings. Today her cheeks are red and she seems depressed but I am confident she will start to feel better tomorrow.

This weekend Emily went to a birthday party on Saturday and had a great time. Today she and I went to see Race from Witch Mountain, we both liked it.

On Wednesday she will be having her weekly labs and we hope to remain at %75 chemo dose if her ANC is high enough. Her protocol doesn't allow her to return to %100 dosage until she can maintain ANC levels for two straight weeks, if for some reason she drops this week its possible we could reduce dosage. The protocol for increasing and decreasing dosage is, 0-500 ANC = holding medication, 500 - 750ANC = %50 dosage, 750-1000= %75 dosage, 1000+ ANC = %100 percent dosage.

Great exam and xray results. (250th post)

Emily is doing really well. She and I had a fantastic ski weekend up in Tahoe. Emily experienced her first heavy snow storm as it snowed around 18 inches between Saturday afternoon and Sunday evening. Due to an issue with car keys ;-) she and I had to stay up an extra night and miss work and school on Monday. (I lost our car keys in the snow putting on tire chains.) I am still amazed that Emily and I got in two ski trips this season. A year ago I didn't picture her treatment going this well. Even looking back at photos from last fall, she really has bounced back to her old self.

Today was her monthly IV Chemo and physical exam. She also had her quarterly chest X-Ray. (every quarter she gets either a chest x-ray or a CT Scan.) The results of the chest X-Ray were great. The small mass of scar tissue in her chest is even smaller than last time they looked at it. It has gotten smaller and smaller each time they have scanned her. To remind you, this mass isn't a tumor but scar tissue left over from the massive tumor she had the collapsed her lung and displaced her heart when she was first diagnosed. Without doing a biopsy they can't say with certainty that it's not cancerous, but there are many signs that it is just scar tissue. Dr. Link says he sees this type of scar tissue often and he's not worried that it is anything bad. With 30+ years of Oncology under his belt, I trust whatever he says. Dr. Link was not there today, he is in Washington D.C. at a conference. We were seen by Karolina our N.P. who is our main contact for Emily's care. Emily's physical exam also went very well, no concerns. She had her labs drawn and her blood levels have really rebounded, her ANC was 2200, so we are going to increase her chemo dosage to %75 per the protocol. I hope with flu season winding up that we don't have to reduce dosage again for a while, but we will see.

On Monday night Emily had her meeting with the Make-A-Wish foundation. For now I am not going to share what she wished for, but once it is official I will let you all know. I do want to say something about Make-a-Wish based on some questions and concerned comments I have received. A child DOES NOT need to be terminal to receive a Wish. Before I knew much about Make-A-Wish I thought that was the case. One of my friends at work was also under this impression and wondering why I was so happy she was getting a wish. So, no worries many kids who receive Wishes go on to live normal healthy lives. You do need to have a malignant type of disease to qualify, which Emily has.

This is the 250th post of Emily's blog, thanks for following.

Ski trip to Tahoe.

Emily and I are up in Lake Tahoe for the weekend. We left Friday at noon and will be here until Sunday afternoon. Emily and I went to bed around 10 last night and were up at 6:15 so I could have her to Northstar at 8:45 for her lesson. We had bacon and eggs and orange juice for breakfast. We were on the mountain by 8:15 so we were able to hang out together in Starbucks before her lesson. She was a little nervous about an all day lesson but she did great ! She was with a group of kids her age and they were on the mountain from 9 - 3. While Emily was in ski school, I met up with from friends from work and skied with them. I picked Emily up after class and we drove home and went out to dinner. Tonight we are going to watch a movie. We are not going to ski in the morning so we can sleep in and head home after lunch. It is supposed to snow up to 2 feet tonight, so tomorrow's drive home may be tough.

Emily's levels have come back

Emily had her blood test today and her levels are coming back, however they are keeping her on a reduced dose until they are up even more. Her WBC = 2.2, Hgb 11.9, Platelets 407K, ANC-1100. You can see her ANC has actually dropped since the ER visit on Saturday, so she is still fighting some sort of virus. She will remain on a %50 dosage. I expect her to be back to normal next week and for them to increase dosage, but you never know what is going to happen. Next week is her IV chemo and physical exam, along with her monthly flash of Prednisone. Prednisone causes your ANC to shoot through the roof, so it's very likely she will be back on full dosage.

On a more fun note, Emily and I are going on a ski trip together this weekend. Just the two of us. We are both really excited about it. We are going to leave at lunch time on Friday and ski Saturday and Sunday. I plan to put her in a lesson for some of it, and for us to ski together the rest of the time. It should be a fantastic trip. On the way home we are going to stop in Auburn to have dinner with Tracy's parents, Grannie and Grandpa Steve.

Overall things are looking better than last week.

Update on Emily and a primer on ANC

Emily is feeling much better after they were able to control her fever and throwing up last night in the ER. She felt good today and even went and played in the park for a little while. She was sort of on a high from the tylenol and IV fluids and felt much better. This afternoon she took a three hour nap, which was good. But she did wake up with a fever of 100.0, so she's still fighting something. We don't need to be concerned about the fever, unless we get a 101.3 or higher after 4am, if we were to get that after 4am we would have to go back to the hospital and have her cultures taken again and to test her ANC level.

Today I was asked why or how does this ANC level seem to fluctuate so much from day to day? For example it was 510 on Wednesday and then 1570 last night. What is ANC? To remind you it stands for Absolute Neutrophil Count. It is not a White Blood Cell count, but is the concentration of neutrophils in the while blood cell count. ANC equals the Total WBC count multiplied by the total percentage of neutrophils (segs plus bands). So you can have a high White Blood Cell count, but a low ANC, it's rare but it is possible. Emily's Chemotherapy is immuno-suppressive, The 6MP and Methotrexate lower the immune system by suppressing the bone marrow from making things such as White Blood Cells. When any of us gets a virus or bacterial infection, our ANC gets lower, but if you are on Emily's Chemo it can drop to dangerous levels, aka Neutropenia. That is what most likely happened to Emily, she was getting this virus this week and that on top of her Chemo lowered her ANC to 510. Then we reduced the Chemo dosage, as you will remember. So her marrow started to work more efficiently and her ANC levels shot up to 1570. That's still a pretty low level but once you get above 1000 your body can fight off viruses. The BIG worry in all of this is if she were to get something like Strep or something bacterial, and if her anc were lower than 500, you can have real issues, including a high risk of death. That's why she needs to be in a ER within 30 minutes of a fever, when she is neutropenic, so they can start IV anti-biotics immediately. So to finally answer the question, Emily's ANC fluctuates a lot because we are constantly trying to control it's range with the chemo, while dealing with external forces such as virus. ANC is the main diagnostic value for Lymphomas and many types of Leukemia.