Emily's Blog

Long over due update

2011-01-27T18:48:00.000-08:00

I haven't updated Emily's blog since last October. Since then a lot has happened to us, but the good news none of it had to do with cancer. I want to keep the blog going with periodic updates all the way until Emily is deemed cured in 2015, but hopefully there won't be much to report. Here are some hi-lights since October that come to mind.

Emily turned 9 on Oct 30th. She didn't want a big birthday party this year and opted to have two of her good friends come over and spend the night. Emily had a fun birthday, and for me big events for Emily remind me of just how lucky we are to have her here with us.

Near the end of November we took a family trip to Punta de Mita Mexico in the state of Jalisco on the Pacific Coast. We were there for the Thanksgiving holiday and my Mom and Brother were also traveling with us. It was one of the most relaxing fun trips we have had as a family.

In December Emily was in the San Jose Ballet's Nutcracker ! She was given a walk on role through a connection she made as Girl of the Year for the Leukemia and Lymphoma Society. She had a lot of fun and did great in the performance.

Now that we are in the new year, Emily is coming up to one full year in remission, her "remission day" is March 12th, so while I'm looking ahead I doubt I will update the blog until then, or maybe after. I can't believe how dedicated I was to keeping the blog updated for 2 years there !

Help a great cause, Team Cancer Crushers

2010-10-16T10:01:00.000-07:00

I'm not sure how many people read Emily's blog anymore other than people who read it when it is posted to Facebook, but just in case I wanted to share about our involvement in Light the Night, which is a charity event sponsored by the Leukemia and Lymphoma society. We are going to participate and are looking for sponsors/donations for the event. All donations are tax deductible and go right to helping people with blood cancer, and to pay for research to hopefully find a cure. Emily is walking in the event and she came up with our team name, Emily's Cancer Crushers. Here is some more info on the event and how you can donate. I'd really like donations to keep coming in even though we topped our goal already. There can't be enough money going to this cause. Trust me.

http://pages.lightthenight.org/sj/SanJose10/EmilysCancerCrushers#Welcome-to-our-Teams-Homepage

October Update

2010-10-07T13:29:00.000-07:00

It's been two months since I have made an update to Emily's blog. That's the longest I've ever gone. It's a good sign, because it means Emily's cancer is not on the forefront of my mind or a top concern any longer. Trust me there is still plenty of stress circling around, but compared to the past two years, it's really nothing.

The September exam went well, she had a chest x-ray, physical exam, and blood work, all were normal. In October we had her exam and blood work done yesterday and she also looked great. Emily got to discontinue the last medication she was on, Bactrim, since they feel her immune system is back to full strength and she can now fight off infections like the rest of us.

Emily is doing really, really well in school. She has a great teacher, and we have her going to a tutor twice a week to catch up. I think she's already pretty much caught up, but she wants to continue her tutor, and I have no problems with that.

August Update

2010-08-13T08:21:00.000-07:00

I'm happy to report that Emily had her August checkup and the results were good. They weren't perfect though, her white blood cell count was below the normal level, and they also felt some swollen lymph nodes. They suspect she is probably just about to get a virus or is currently fighting one off. Our NP, Saddie, showed us her entire CBC results and told us that several of the readings need to be out of range before they would get concerned. She has had dips like this before she told us, looking back at her charts. Dr. Link's assessment was that Emily looks great, and there is nothing to worry about. The lymph nodes that are swollen are not the ones they worry about. Emily had been playing with a child who was sick, a day before her appointment. All that said it wasn't the most assuring check up we have had. I suspect with school starting up soon that flu season will be back and CBC results will vary more over the year, and I need to prepare for that.

Other than this checkup we rarely talk about Emily's cancer anymore. It's pretty nice. Of course people ask me all the time how she is, which I love. Our family's focus lately has been biking. We all got new bikes recently and have been doing a lot of riding. Emily also went camping this past month with her cousins and her grandpa. I think the big excitement for the month was going to horseback riding camp. Next week we have her enrolled in a sports camp, and then school starts.

Next month she'll have a check xray to check things out inside.

July's monthly exam.

2010-07-15T17:48:00.000-07:00

This past Wednesday was time for Emily's monthly checkup and blood test. This was her 4th month since she stopped chemo on March 12th. The exam itself was not remarkable, Emily looks great and her blood work did as well. Dr. Link's comment as he was leaving the room and took one more look at Emily he said, " you're just gorgeous." Tracy and I both commented later that we don't think he says that to every patient.

Emily does look exceptionally healthy right now. She has lost most if not all of her "Prednisone face" and lost some of the weight gain that those steroids caused. She also has been really active this summer. Lately she has been really focused at doing all sorts of flips on the monkey bars. This past month we also made it up to Lake Tahoe for the 4th of July. Emily and Haley both had a good time. Coming up this next month Emily is going to be going camping with her Grandpa and three cousins at Rawlins Lake in the Sierra's. That will mark Emily's 4th trip to the Sierra's this summer. She is also going to do a week long horse back riding camp she is looking forward to. We are trying to keep her busy this summer.

Overall things are going really well for us. I think Tracy and I thought that transitioning off of chemo was going to be tougher than it has been so far. We don't look back too often, and really don't think much about the details of experience expect for once a month in the days leading up to her exam.

Moving into a new frame of mind

2010-06-17T16:48:00.000-07:00

June has been a great month so far. I can say that for the first time since she ended therapy on March 12th, that I really feel like we've moved into a new stage or frame of mind. Cancer doesn't come up so much anymore, during treatment we would talk about cancer in one form or another at least twice a day, if not much more often than that. But these days, it doesn't really come up anymore. Over this past weekend we went away to Yosemite, and realized after we returned home that we didn't utter the word "Cancer" the entire weekend.

This week though, was Emily's regular monthly exam. She also will be getting chest x-rays quarterly, so this month it was time for a CXR too. We went into Packard, had her blood drawn, vitals recorded, did the chest Xray. Then we met with Dr. Link and Sadie for Emily's physical exam. We also got the results of the xray and Labs. Simply stated, Emily looks great in all regards. We all have noticed that Emily is losing her Prednisone look and looking much more like her old self.

I mentioned our trip to Yosemite, and besides Emily being done with school is the high light of the month. We decided to go to Yosemite to have a weekend get-a-way for Tracy's 40th birthday. We stayed at a place called the Tenaya Lodge which is 2 miles outside the southern gate to Yosemite on HWY 41. The hotel was very secluded and also very nice. I think the kids would tell you the best part was the pool. On Sunday we drive into Yosemite Valley and rented bikes. We rode the bikes for 6 hours around the valley, stopping to let the kids play in the river and on the rocks. The kids and I had packed a surprise picnic lunch and we found a great place right by the river to have it. After we were done in the Valley and drove back to the Lodge, and the kids swam for 2 hours. They had a nice poolside bar that Tracy and I took advantage of. Emily and Haley each made friends with other kids in the pool and it was so nice just to watch them swim and have fun. On Monday we went to the Mariposa Grove in Yosemite. This is a stand of Giant old growth Sequoia trees. To get there you have to hike a mile uphill, the kids did it, but with a few complaints. After our hike, we had another picnic in Wawona by another river. After some more playing in the river, it was time to pile in the car and head home. We were only gone two days but it felt like much longer. Life for us seems to be returning to the way it used to be......fun.

May update

2010-05-19T18:31:00.000-07:00

Today was Emily's monthly trip to the hospital.

Today included a EKG and ECHOgram tests. One of the medications she was on causes heart damage in some people, in fact in some people the damage is so profound and immediate that they have to discontinue therapy with that drug. In Emily's case they did scans of her heart when she was diagnosed, and then again after she had the course of medication and in her case they didn't detect any damage. They are also using a new genetic test, where they swab the mouth of the patient, and can predict if doxyrubicin will cause damage. Emily "passed" that genetic test, so we aren't all too worried that we will hear there is damage. We don't have results from cardiology just yet.

After the stop at Cardiology it was time to go to our home base, Oncology. I hadn't been to the clinic in over two months but it was pretty much the same, full of happy kids and worried parents. seriously that's pretty much what you see in there, kids coping with their disease but more excited to play or watch a movie, and parents who look scared and worried. Emily had her vitals taken and blood drawn. After that it was time for lunch and then her physical exam.

In the exam we found a surprise, Emily had an ear infection. She had a slight fever over the weekend and the ear infection is most likely the reason why. It was actually nice to have something to link to the fever. She is now on a very high dose of amoxicillian, in fact so high the pharmacist called to check.

The rest of the exam went perfectly. The clinic already had the lab results, and her blood looks great. The levels that should be rebounding are doing so, and they see nothing that concerns them.

Next month will be another exam, labs, and they will do a chest Xray.

All in all great news today, except the little ear infection of course.

Learning to live without Doctors.

2010-05-03T17:25:00.000-07:00

I haven't updated the blog in a very very long time. To the point where I actually missed the blog and wanted to update it. Having the blog was helpful on so many levels during Emily's treatment. It was a way to communicate status in an easy way, it was a great record of what actually happened over the two years, and most importantly it was an incredible outlet of my emotions and feelings along the way. It was also a good ice breaker with friends and people at work, they didn't have to ask me what was going on with Emily, rather they could comfort me (if they wanted to) or at least be supportive knowing what I was dealing with at home. But now that I am trying to transition into a more "normal" life I don't feel the need to update the blog as often.

So, what's been going on since I last updated the blog? We went on our trip and cruise. It was a really really great time. We stayed at Disney World at the Animal Kingdom Lodge. We got a savanna view room which was a real treat. At about 10pm at night we were sitting on our verandah and a giraffe wandered by, then a few minutes later a zebra. The kids were loving it. We also spent a day at Disney World. It was a really good time, the kids had a blast. I decided to use Emily's illness one last time and got a card that allowed us to skip all lines for rides. We rode everything we wanted. I think the hi-light was Haley going on the Log Ride and loving it. She was just barely 40 inches tall which is the cutoff so they let her on. We had a really fun time that day.

The next morning it was time for the cruise. Disney has everything planned out really well. You check into the cruise from your hotel room at Disney World. They take your bags in the morning, and you just have to pack a backpack for the ride over to the ship. when you get to the ship, your bags are outside your room. The whole cruise was just incredible. It greatly exceeded my expectations for fun, and ease of family travel. Maybe the best day was the day we spent at Castaway Cay, an island Disney owns in the Bahamas. The weather was perfect, the beach was perfect, and was really just a great day. To be sitting there on a beach chair in about 4 inches of water, with a drink in my hands, watching the girls go crazy in the blue water was pretty heavenly. To think what we had been through.....well to be honest I didn't think what we had been through I just enjoyed the perfect moment.

The whole trip was great and there's just too much detail to put here but we had a blast.

When we got home Emily got sick. It was stressful, she developed a cough a pretty bad one. Given that her original diagnosis was a collapsed lung with a mass in her chest, it's hard not to "go there" when she has symptoms like that. We called the Oncologists to report the symptoms. the first two calls they confirmed that what they were hearing on the phone didn't sound like anything they would be concerned about. Finally on the third call and my insistence they had Emily come in for an exam. and sure enough it was probably a virus. They did test her blood since they had her in the office and her WBC was low, and her ANC was low, both signs of a virus. They told us that if her ANC had been REALLY high they may have been concerned but since it was low it was a sign for sure that nothing unusual is up. Sure enough she is slowly getting over her cold. the rest of the family has it now too. This story illustrates how the next several months will be. Any possible sign of symptom Tracy and I, mostly I, will stress and obsess about. The Oncologists were very nice about giving her an exam, and keep telling us they know this is a very stressful moment in therapy. they didn't tease us or give us a bad time about having to bring her in to be sure. But we need to learn to live without a doctor on call 24/7. It's harder to do than you might think.

Lastly we have been very involved with the Leukemia and Lymphoma society, both the Man and WOman of the Year campaign and now the Light the Night Campaign. There have been several articles in the San Jose Mercury about Emily and our involvement.

http://www.mercurynews.com/search/ci_14993872?IADID=Search-www.mercurynews.com-www.mercurynews.com&nclick_check=1

http://www.mercurynews.com/search/ci_14845694?IADID=Search-www.mercurynews.com-www.mercurynews.com

What's going on with Emily

2010-04-09T00:57:00.000-07:00

I miss updating the blog, but at the same time it's nice to have had a little break. Emily is still doing really well, bouncing back into what will be her "normal" life. I have no medical updates because we haven't seen a doctor since the end of treatment tests. she looks great, she has energy and is happy to be done.

Last night we got to share her story at the Leukemia and Lymphoma Society's Man and Woman of the Year campaign. Emily did a great job speak and I helped her out a bit too.

We are off to have some fun and I'll have a full update when we are back from our trip.

All of Emily's tests were clear.

2010-04-02T20:34:00.000-07:00

Today was the big day at Packard to get the results of Emily's CT, Chest Xray, Blood Test, PET Scan, and Spinal Fluid, and Bone Marrow tests that were done this week. The wonderful news is that all tests were free and clear of cancer ! We are all very happy and relieved that she made it through treatment.

So, what's next? Next month she is going to have an EKG and ECCOgram to assess her heart. One of the medications she was on causes heart damage. They did a scan at the beginning of treatment, and they will compare it with end of treatment to assess how much damage was done. We aren't that worried, I expect some damage to her heart, but I also have the feeling that whatever they observe will heal itself over time. If not, then Stanford is one of the leading Cardiac centers in the country and we'll be in good care.

Other than that she has an appointment to see Dr. Link in about 5 weeks. Until then she doesn't need to worry about her cancer, and we are going to try not to worry either.

I am planning to keep the blog going, but much less frequently than I have been. When she gets her monthly checkups I'll update the blog. Other than that we are going to try to return to our normal somewhat boring lives.

Thanks for listening and letting me "vent" through the toughest thing I've ever had to go through. Also thanks for supporting Tracy and Haley. And most of all for Emily. We feel all the support and love.

LLS Article on Emily

2010-03-29T15:51:00.000-07:00

http://missionpossible-svmb.com/2010/03/29/mission-monday-meet-emily-pepper-our-girl-of-the-year/

Leukemia and Lymphoma Society's Girl of the Year.

2010-03-23T17:20:00.000-07:00

The Leukemia and Lymphoma Society is split into regional chapters. For our region, Emily was selected as the "Girl of the Year". She was nominated by her social worker, Leah, who we have assigned to our case at Packard Hospital. Leah of course checked with Tracy and I before she nominated her, and since we have been very public about her disease and battle, we really didn't have an issue with it at all. Tracy and I see this as a fun experience that we get to be involved in, and we have the feeling that a lot of money is going to be raised through the campaign.

Here's a little information about the campaign and what is going on. The LLS (leukemia and lymphoma society) have a campaign called "Man and Woman of the Year". It's a group of very influential people, men and women, who enter to compete against each other to raise the most money for the LLS. These adults are not necessarily cancer survivors, but a lot of them have been touched by cancer in some way in their lives. So they are competing to raise money. In order to help them raise money the LLS chooses a Boy and Girl of the year. The Boy and Girl help each of the Men and Women of the year candidates raise money. They help all of the adults so the kids win no matter what, and it's just an experience for them to be recognized for their battles against cancer, representative of all the people who have Leukemia and Lymphoma, and show that you can survive. And let's face it, people are more willing to donate when they see a picture of a sweet little girl or boy who has had to fight the disease. I don't mind "using" Emily for that at all, I mean she is super cute, and very good at expressing herself, so she's a natural for this kind of thing. She is also excited about it, which is also very important, I would only do this if it were going to be a positive experience for her. Emily will have her picture up on the LLS web site and displayed other places too, along with her bio and story.

So for example this coming Friday we are meeting one of the women of the year candidates. We are going to meet her at a nice home in Los Gatos for a photo shoot. One of the contestants, Greg Kihn, has a morning radio show, and we will likely be on the air with him at some point, and other opportunities like that with the candidates to help them raise money.

There is going to be a kick off dinner at the Plumbed Horse in Saratoga, just two days before our cruise. I am going to have to speak at this dinner and share Emily's story. I am a little nervous about it because I've been told there will be around 100 people there. And I can't imagine telling the story without crying, so we'll see how that all goes. But as I think about it, in the event that I do cry, I bet I won't be the only one, so it will be ok.

Emily is doing really well. She is feeling great. Next week is the big week for us. Monday the CT, Tues PET, Wednesday Bone Marrow, Thursday nothing, Friday RESULTs. Dr. Link is even coming in on his day off to give results so we don't have to wait any longer than absolutely necessary, and so we can start to relax and pack for our cruise to the Bahamas and Disney World.

I am taking 3 weeks off of work, my last day is this Friday. My work is being extra supportive of me right now, as they know this week is pretty hard to focus on anything but those test results. Intuit really knows how to treat their employees, I'll always be grateful for how I was treated over the past two years.

Emily didn't have her labs today

2010-03-17T08:14:00.000-07:00

Emily did not have her labs today and we have no flipping clue what her ANC is. Dosage remains at ZERO. :-)

I wish it were really that easy to deal with, just move on as if it's over. But I can say that ending chemo was easier than I had envisioned. I thought I would have more anxiety than I do. I worry every day, but no more than I did when she was on therapy. I think the week of March 30th with all the tests and the ultimate results on April 2nd will be a hard week. But I realize we can't get to a cure without going through weeks and times like these. Tracy and I are extremely hopeful for good results. I don't even think about the chances for a bad result, but somewhere in the back of my mind I know it's a possible outcome, but I'm not dwelling on it, or more dwelling on the near %90 chance that it's a good result. I made up the %90 btw, no one really knows. It's nice to have a vacation to be packing for that week of all the tests.

Speaking of odds, I FINALLY after two years went and read the Leukemia and Lymphoma Society's web page on non-Hodgkins Lymphoma. I figure that I can finally let myself know a little more. So they claim that for all NHL's,(non-hodgkins Lymphoma) cure rate is currently %84.4. The scary news was 30 years ago it was near %0 for 5 years. Emily and all of us are lucky to be alive now, and even though the LLS won't be biased on treatment centers, we were and are lucky to have Stanford and Dr. Link.

Thanks for all the support along the way from our readers.

FINAL SCORE: PEPPER FAMILY 733 CANCER 0

2010-03-12T08:20:00.000-08:00

Dateline San Jose: In extraordinary fashion team Pepper has delivered team Cancer a devastating defeat. Cancer brought all it's power, a team led by T-Cell Lymphoma known for it's strong crushing offense and also a team known for their trick plays and fouls. And team cancer did not pull any punches in this match they hit hard from the beginning. If you let team cancer score first then teams usually don't walk away winners. But Team Pepper led by their captain Emily, beat cancer ever step of the way. For every curve ball thrown Emily's way, she deflected the threat, and seemed to do it with a smile. Team Pepper looked a little disoriented early in the match, but you could see that once they got in line things just started clicking. Cancer, as usual, wasn't a good sport, played dirty and still got completely shut out. As for MVP, it's pretty clear who gets that award today. Yes, Tracy, Chris, Haley, Dr. Link and Karolina played really well, but Emily Pepper really deserves the credit for the win. Team Pepper is looking to retire with a 1-0 record.

(733 is how many days it has been since Emily was diagnosed with cancer, we won ever day.)

Enjoy, some picts from along the way.

2010-03-11T21:12:00.000-08:00

Final labs of Chemo are complete, 3 nights of meds to go

2010-03-10T18:55:00.000-08:00

Emily had her weekly labs today. (how many times have I written that exact sentence.) We got the results in the standard 2 hours, and Emily's ANC was 2100, which at %75 dose was a little lower than we expected. In fact, Tracy and I were thinking if she had been on %100 dosage all last week there is a chance she'd have been neutropenic today. So once again, great call Dr. Link on the dosage !

Emily has 3 nights of medicine left. Tonight will be 6MP, tomorrow night 6MP and Methotrexate, and Friday night will be 6MP her final dose. Emily has requested to smash a Prednisone pill with a hammer in the back yard on Saturday, which we are going to let her do. The rest of her medication will be returned to the pharmacy so they can properly dispose of it.

One last BIG blog post to go in therapy. I plan to maintain the blog after but probably reduce normal updates to monthly.

Labs were as expected we are now 10 days from being totally complete

2010-03-03T17:42:00.000-08:00

Emily had her weekly labs today. This will be her second to last weekly lab, and after next week she will only need to go into the clinic once a month. Her ANC was where we would expect, around 5500. Since she is on a %75 dose of her medication cocktail, we expect to see higher ANC scores, since ANC is what you are suppressing with chemotherapy. She will remain on her %75 dose from here on out. At this point the honest truth is being neutropenic is more dangerous than any possible effect of 2 weeks of chemo at this point. I have to remember that as we go through the next few months. When Emily is neutropenic and even hospitalized for it, I hardly worry at all. And what the doctor is saying is the worry about cancer is even less than that worry about neutropenia. I honestly dont' worry when Emily is neutropenic and in the hospital, I hope that in a few months I can be that relaxed about worrying about relapse.

I have to admit that since last week I've been using denial as a coping mechanism, and I'm questioning myself on this strategy. When I learned that the next step if Emily's scan is not clean or if she relapses would be a bone marrow transplant, I couldn't / really or can't deal with that possibility. Many people I know, especially at work, come up to me and commend me on how I am able to juggle a complex position in my company, and deal with having a very sick child. And yes, it's hard and has been hard to do. But I really have been holding on by telling myself this therapy will work, but if it doesn't I really don't know what I will do, or how I will be able to go on. Especially when I heard the next step is a marrow transplant, that's where the denial has come in. Before learning that I have told myself to prepare for the possibility of a bad result, thinking we may have to continue her therapy, but after learning the next step is something I don't think I can deal with, I just decided to tell myself there is no chance the scan will be negative. I really hope I'm not setting myself up for a real fall, when I was so good at keeping honest to myself all the way through.

I filled my emotional gas tank up two years ago with two years of fuel, I'm running on fumes at this point, and there better be a gas station around the next corner, all the signs say it's there, but I can't see it yet. that's my best analogy of how draining this all is.

Prednisone.......done

2010-02-27T17:13:00.000-08:00

Tonight is Emily's last night of Prednisone. At dinner she will take her last 15mg and that's it for treatment.

All of the drugs Emily is on have bad potential side effects, including Prednisone. Of it's risks at her dosage and duration are stunting of growth, thinning of the skin, brittle bones. She's probably had all of these to some degree. It's also really hard on your liver and kidneys. We hope that damage will repair itself, it likely will. Her liver levels have been increased all the way through Chemo, and Prednisone has had it's role in that. It's also the drug that makes her bloated and puffy looking, in fact I hardly can image what the real Emily would look like at this point because of the toll Prednisone has played on her. But of all the side effects the one that has been the toughest are the mood swings. Each month for 5 days she's on this high dose and her personality changes greatly when she's on it. Some months worse than others but always some trouble with it.

I am grateful for drugs that have been able to help save my child, and Prednisone is a major player in the mix, but now it's time to leave it in the past. I hope as we move into the future, that research comes up with a more effective alternative with fewer side effects.

Big milestone for Emily

2010-02-24T20:29:00.000-08:00

Today was Emily's last IV Chemotherapy treatment ! Even though I've been talking about the end for a while we can't really believe it's here. Emily is in the middle of her last pulse of Prednisone. She's on day 2 of 5. This is her last pulse. Everyone was really excited for Emily, all the staff congratulated her when they found out this was the last IV treatment in the day hospital. We will still see them all, for years, but not as frequently that's for sure.

Emily's exam went really well too. Today we met our new NP, Sadie. She is from UCSF and has experience with Oncology patients. We really like her, she was especially good with Emily and Emily warmed up to her quickly. We will miss Karolina but we are really happy with her replacement too. The exam with Dr. Link was great too. He said Emily was doing really well and it was time to end treatment. He also did a really good job explaining to Tracy and I just how well Emily's odds are at this point. He didn't give a number or percentage but explained that with Lymphoma a large majority of deaths occur towards the beginning of treatment. %10 or so who never make it to remission, and then relapses early on, and complications of therapy. Since Emily has made it through all that, her odds are pretty good. We of course need to do the scans to confirm this all, but you can tell Dr. Link expects clear scans. We all agreed that March 12th will be her last night of chemotherapy all together. So for the next 16 nights, including tonight, she has to take her pills and then we stop. She will continue to take her antibiotic Septra on weekends for the next 6 months.

We also coordinated so that Dr. Link will be able to read all our scans and consult with us before our cruise. So on April 2nd, sometime in the afternoon we can confirm that Emily is cancer free. This meant having to add in her bone marrow asperate earlier than we had planned, but really better for all of us, less time to wait.

That means March will be filled with excitement in the middle when she is done with therapy, and then I'd imagine some stress as we get closer to the meeting about scan results.

Great transition from Karolina to Dr. Link

2010-02-19T13:25:00.000-08:00

A few weeks back we told you that Emily's NP was leaving Packard. The NP or Nurse Practitioner in the Packard Oncology clinic is really your main point of contact. They have a case load and manage patients and make sure the Oncologists have all the updated information so they can make their assessments quicker and more accurately. It's really the only way they can reasonably keep the costs of care down, and frankly each Oncologist is an extremely busy person. They are in clinic, operating rooms, researching in labs, and its a teaching hospital so they are training resident Oncologists for their careers.

So, we were worried when Karolina told us she was leaving. We knew her so well and had been through so much with her. I feel like she's on the team in a big way. And then suddenly she was gone. We were worried not that Dr. Link doesn't know what he is doing, he's very distinguished (Chief Pediatric Oncologist for Packard Hospital, Professor of Hematology and Oncology and Stanford Med School, he frequently is called to Washington DC to consult with medical care leaders, and is now the President of the Clinical Oncologist Society) His plate is full, plus he has a patient load, of course including Emily. We were worried he just doesn't have enough time for all of this.

Well, even though Karolina is great, Dr. Link is equally amazing. He responds to my emails within hours, not only with the answers to my questions, but also with supporting data and coaching for how to interpret the data. It's like he's taking the time to teach me rather than to just tell me what to do. Also I have found that if he says he'll follow up, he will. He's been extremely thorough. The past two nights he has emailed me with more information from a question I had two days ago.

Some of say we work 24/7, but seriously Dr. Link might honestly be able to make that claim. I sincerely hope that no one of you who reads this is ever going to need a pediatric oncologist, but if you do, you would have to consider Dr. Link, he's an amazing person.

change in protocol, I need to deal with it

2010-02-18T10:48:00.000-08:00

Yesterday Emily had her weekly labs and her anc was 4200. Normally on her protocol that would mean an increase in dosage back to %100. But for some reason they want to keep her on %75 dosage. I emailed Dr. Link last night, and he was quick to respond. He told me that since she isn't on an official study they don't have to stick to protocol. He feels like she's so close to the end that an increase in dosage while it might seem like a good thing to do, may introduce risks we don't need at this point. He said "I'm not sure that whatever we do at this point will have much effect on the overall outcome." I respect him so much that I will trust his judgment on this. I would have to agree that a hospitalization at this point for neutropenia would be extremely anti-climactic, and if it happened she would have to completely discontinue chemo. As I am writing this I can see that he is right, and understand his POV a but better.

We have 3 weeks left as of tomorrow. Emily is off school this week for Presidents Week. Next week is her last IV Chemo and last 5 days of Prednisone ! So starting next week are going to be a series of "lasts". The last time we are going to have to do some of this stuff. I'm also looking forward to getting an entire shelf of our kitchen back which currently houses so many drugs we could open a pharmacy. Flushing some of the extra meds will be cathartic as well !

I KNEW we'd get here, to the end, even though I couldn't admit that to you all. And I want to reiterate because it's so strong of a feeling, how for me this seems like it's been just a few weeks, not 2 years.

28 days and counting.

2010-02-11T18:56:00.000-08:00

Emily had her weekly labs yesterday. Her ANC was around 3000 so that means she remains on %75 dosage. If her ANC is about 1000 next week, she will go back to %100 dosage. As of today her chemotherapy is scheduled to end 4 weeks from tonight. I don't have much else to write this week, everything is going well.

36 days of Chemo left !

2010-02-03T17:47:00.000-08:00

Today Emily had her weekly labs. Her ANC was 4400, which means she can move back up to %75 dosage for this week. She was on %50 dosage the past two weeks, so I am not too surprised her ANC is 4400. She does have a virus but apparently not a very strong one.

We basically have 1 month and 1 week until Emily can stop taking her Chemo drugs. She is going to remain on Bactrim/Septra every weekend for another 6 months, but that's "just" an antibiotic. Even though her immune system will come back fairly quick, there are sub components of it that aren't going to, so they keep her on antibiotics to help out. She has been taking that every weekend the past two years. I can see us forgetting it here and there because we won't have as tight of a drug regime at home anymore.

Immediately after Chemo ends, maybe 2 weeks after she will have to get a CT Scan, and a PET Scan. When we get back from our Cruise in April she's going to have a spinal tap and bone marrow aspirate. They need to do all those tests and she needs to pass all of those tests before Dr. Link can really sign off that she is cancer free. I am going to be extremely stressed until at least the CT and PET have been completed.

Have you ever had something totally unplanned come up, that you had to devote almost %100 of your focus and energy on, for a short period of time? Image two years of feeling like your life is on hold? That's the best way I can sum up some of my feelings lately. I remember March 8th 2008 like it was just yesterday, seriously, I can tell you the weather, what clothes I was wearing, where my mom was, my call to Tracy telling her that Emily was being rushed to the ER without me and that she needed to meet her there. I remember the projects I was working on at work. It's like my life went on hold and I dealt with what I had to deal with. I also have this false sense that once her treatment is over I am going to transport back to that moment and life will go on. Of course that's never going to happen. But feeling like those feelings and thoughts tell me just how traumatic this experience has been to me, and I'm sure I can say the same for Tracy, and Haley too. The saying "if one person in the family has cancer, the whole family has cancer" really hits home.

Above I mentioned our cruise. Even though I am feeling stressed about the end, I am also glad we have a very exciting and relaxing trip coming up. I have never spent so much on a vacation, and I can say I have been on some pretty nice trips. We are really going to enjoy ourselves, and no matter what the future decides to send our way we are going to celebrate our accomplishments as a family.

Second to last chemo complete, and change in team.

2010-01-28T07:24:00.000-08:00

Yesterday was Emily's second to last monthly IV Chemo ! The exam itself was unremarkable and went well. Most of the discussion was around all the tests Emily will need at the end to prove she is completely cancer free. She's going to need a CT ad PET scan, and will have to have some light surgery to get a spinal tap and to get some marrow from her CNS. We will be doing the scans before we go on our cruise and then have the surgical procedure once we get back. They like to wait a while to take the marrow because they would t' see a relapse if they did it while the effects of the medication are still around, it will take about a month of time to be safe for the procedure.

Emily's social worker approached us yesterday to tell us she wants to nominate Emily to be Leukemia and Lymphoma Society's "Girl of the year". Each year the society chooses a local boy and girl who are survivors of cancer. she would be on posters and we would get to speak and tell Emily's story, which I think is so inspirational. (selfishly). So you locals may be seeing Emily on posters in the Bay Area.

The biggest piece of news yesterday took us completely by surprise. Our N.P. Karolina told us that she is moving and won't be here for the rest of Emily's treatment. This is a big deal for us, since at Packard your lifeline to treatment and your physician is through your N.P. She's part of our team and it feels weird to have her leaving. She's the one who knows all the details of Emily's care. I am glad we are so close to the end of treatment, but mixed feeling because even after maintenance we have 5 more years to go. We're really going to miss her and also wish her the very best in her future. I can't even begin to say how thankful we were to have you Karolina, you are an amazing person. I will always feel in debt to you for what you've done for me.

Resume at %50

2010-01-21T15:08:00.000-08:00

Emily's ANC was around 1250 yesterday at her labs. this means she can resume her therapy at %50.

I was surprised it was as low as 1250 given she wasn't on therapy, but that shows the how strong she is having to fight this virus. Next week is her IV chemo and prednisone week, so that will increase her ANC most likely.

Of of today there are exactly 7 weeks of treatment left.

Emily is home, quicker than expected.

2010-01-17T13:31:00.000-08:00

Emily got out of the hospital earlier than expected and got to spend last night in her own bed. Her labs earlier in the day Saturday were good, her ANC was around 650. They also track percentage of neutrophils in the WBC count and can see a virus start to clear, even before the symptoms go away, as I recall she was admitted with %39 and on Saturday was up to %54. Basically what they could see was that Emily is getting better. She also had not had a fever since she was admitted. Since 9pm Saturday night was technically 48 hours after her first IV antibiotics, I asked day I asked for a conditional discharged at 9pm. The plan was to keep her overnight and discharge her during rounds on Sunday morning. Since all the signs looked good, and Emily herself seemed totally fine relative to why she was there, they agreed to let her go at 9pm. And then ended up giving her last IV antibiotics early and letting her go around 8pm. It was great to all be home last night. It all depends on external factors but there is a good chance that that was her last in-patient admission in her treatment. Technically she will be admitted for scans, but I mean overnight in a ward. All her nurses during this stay commented that she was their easiest patient and their happiest patient. I had a fairly long chat with Dr. Dahl, the oncologist on call this weekend, and he thought she looked great. There are no new concerns and she seems to be doing great overall. Dr. Dahl is who you get if your child has Leukemia and he has excellent bed side manner, it's like talking with your Dad, and you can tell he loves children. Also since Leukemia and Emily's form of Lymphoma are so related, he was a great person to have examine her with fresh eyes.

Emily is still on hold from her chemo until labs Wednesday, when she will likely resume at %50 chemo for the following two weeks.

There are 53 days of treatment left.

Hospital day 2, update

2010-01-15T13:15:00.000-08:00

Emily was admitted to her room in 1-North last night. She is doing great. she had a nice night of sleep, has watched about 5 movies, done some art projects sent down from the play room, and we walked over to the Stanford side of the hospital to listen to their live Jazz series they have on Friday's at the in the Bing Atrium. This morning Dr. Dahl was doing rounds on 1-North and saw us late morning. He explained that even though Emily looks great, given that she was neutropenic and had a fever spike, the protocol for her treatment says she needed to be hospitalized for at least 48 hours. She needs to get IV antibiotics and regain her ANC count. In 48 hours the results of her blood and urine cultures will be back and if they are negative and her ANC is at a certain threshold, she will be released. Unfortunately for her 48 hours will be at 11pm Saturday night, and they usually don't discharge people at night, so she may be in here until Sunday morning.

Yes its' stressful to have a child in the hospital, but overall Tracy and I are not worried one bit about this, it's just part of treatment, part of the "drill".

We have a nice private room tucked in near the Stem Cell transplant part of the ward so it's very secluded and private and quiet. Emily also likes the food here again, that's how long it's been since we practically lived here for a few months back in 2008.

more updates when I have them. Get out there and have a wonderful holiday weekend.

Chemo working a little too good, she's neutropenic again

2010-01-13T19:09:00.000-08:00

The increased dosage of chemo has finally shown itself in Emily's labs. Her ANC was around 350, which is pretty low, defintely moderate neupenia. To remind some of you, that means she doesn't have enough neutrophils in her white blood cell count to fight common colds and viruses effectively. It means we have to really consider her exposure to the public, weighing risks and benefits. School may be worth the risk, but the Sharks game we had tickets to tomorrow night is a definite no no. Malls and movie theaters are strongly discouraged as well. This is data we all can consider during flu season. So this week her chemo is reduced to zero, nothing for the whole week. Next week we will start building up to full dose again. I did the math and by the time she is back on full dose, she will only have two weeks of therapy left.

Some of you may be wondering, "is it a concern that Emily is having these issues so late in therapy, is this a bad sign?" The quick answer is no, in fact it's completely possible that on her last week, she could be neutropenic, and that therapy would be considered a complete success, neutropenia is just a side effect of strong chemotherapy.

In immuno-suppresion you seem to be doing a "dance" with the combination of drugs, viruses, the disease, and the environment. With a child who really doesn't understand how viruses are passed, and who has to go to school, this is just part of the road to recovery. They have done the studies and it's much more beneficial in the long run for Emily to be in society, rather than locked in a sterile hospital. (In the 1970's you literally dropped your child off at diagnosis and hopfully picked them up when they were "done" current oncologists at Packard remember this, that's how recently treatment was done that way.)

Emily's Doctor, Dr. Link received a special honor this week. Dr. Link was voted to be President and lead the American Society of Clinical Oncologists. He was voted in by his peers, the organization consists of 27,000 clinical oncologists. He also has the honor of being the first pediatric oncologist to ever be named President of the society. We are really excited for him and the whole program he leads at Packard, this really shows how great they are. He will continue to see his current patients so there is no worry there.

Labs are in and increased chemo seems spot on

2010-01-06T22:21:00.000-08:00

Emily just finished her first week of increased chemo dosage. The reason her dose was increased was because she's grown and gained weight so the dosage is adjusted for that. However it was the first increase she has had since she started maintenance back in November of 2008. So the new %100 chemo has been adjusted going forward.

She had to take Zofran a few times this week because she woke up feeling nauseous. My guess is after a few weeks she won't need that anymore, but we will see. She also complained of leg pain, which was probably due to an increase in the IV Vinchritine last week. To remind you, Vinchristine causes neuropathy and if you watch Emily run you can see the longer term side effects of the drug. It should slowly resolve over the years after treatment. Some children get it much worse and have to do physical therapy at the end of treatment.

The results of her labs justified the increased dosage all her levels were great and her ANC was around 2600 which is good. I mentally track her ANC and for the week following steroids high 2000's are normal and the levels typically work their way lower over the month until the steroids jack them up again.

Emily is back to school this week, and she seems happy about it. I think she missed her friends and teachers over the holiday and was excited to see everyone again.

Emily will remain on %100 dosage for the week ahead.

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

2009-12-30T10:28:00.000-08:00

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

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

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

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

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

Labs were great, and we are set for Christmas.

2009-12-24T10:16:00.000-08:00

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

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

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

Back to full power

2009-12-16T20:05:00.000-08:00

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

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

Going strong

2009-12-09T21:00:00.000-08:00

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

Holiday Performance

2009-12-03T23:32:00.000-08:00

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

Monthly Chemo and H1N1 update

2009-12-02T19:37:00.000-08:00

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

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

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

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

Labs and CT results

2009-11-25T12:44:00.000-08:00

Today was Emily's lab day. I was able to take her this week and give Tracy a break. Since Emily is still H1N1 positive she has to be isolated from the other 1 North patients. There are kids in the waiting room who are waiting for bone marrow transplants, with resperators on that really can't risk Emily being near them. We had her labs drawn and she did a great job. Then they told me that Dr. Link wanted to see Emily. At first I was a bit alarmed because Dr. Link doesn't usually see people on their lab days and even more rare to see him without an appointment. Then I remembered that we had a CT scan Monday and he must have the results. Again this was the first time we've had CT scan where I was much less worried than I have ever been about the results. I remember the first few CT scans were so hard on me because we had to wait days for the results, and the results are so important, they are THE true diagnostic that the treatment is working or that it isn't. But this time I think I actually worried hard for about the 2 minutes I was sitting there waiting for Dr. Link to come in the room. He walked in all masked up and said to Emily, "Your CT looked GREAT! What's for dinner tomorrow night?" And they started to talk about Thanksgiving.

They told me they need to swab her next week for H1N1 again to see if it's gone, but until then she remains on Tamiflu. One of the side effects of Tamiflu are bad dreams, and or hallucinations, Emily's has been reporting some bad dreams lately. We don't know what she is dreaming about because she tells us it's too scary to talk about. Sometimes the dreams are about her and sometimes about Haley. We are keeping an eye on her well being but she really seems great otherwise.

Tomorrow we will be having a very early Thanksgiving Lunch at my Mom's house, Tracy has to work the evening shift so we are getting the meal in early so she gets to be there.

Happy Thanksgiving to Everyone. Have a wonderful day with your families and loved ones.

Emily still has H1N1

2009-11-23T09:12:00.000-08:00

We got call on Saturday from the ER doctor at Stanford to inform us that Emily's swab for H1N1 was positive. We were surprised that was the reason for Friday's fever. Actually we aren't sure it is the reason for her fever, she could still be fighting H1N1 and have a second virus. Since she is on active therapy the protocol calls for her to go back on Tamiflu while she is positive for H1N1.

Today we are at the hospital again, for a scheduled CT scan. This is to check to make sure she is still in remission.

Another trip to the ER

2009-11-20T18:44:00.000-08:00

Today Emily spiked a fever of 101.6. We were surprised since it seemed like the other night she had beaten the current virus. Since she was Neutropenic on Wednesday with an ANC of 630, we had to take her to the ER right away. They were ready for her when she arrived, they did urine cultures, started an IV and drew blood. Her urine was really cloudy so we were worried it could be an infection. They also swabbed her for H1N1, but since she just had it, they were swabbing to prove it was gone, they don't think she has it again. In the hospital her fever was 101.2. I've noticed our thermometer is always a little higher than the reads at the hosptial, I think %100 of the times we've gone, maybe it's time for a more accurate one? Anyway it was still high enough to justify being in the ER, anything above 100.3 for Emily is a serious fever.

It took a while to get results, but the results were good. Her ANC has bounced back to 1800. Also her urine was clean. The Dr. told us she was surprised about the urine too, she was also worried when we gave her the sample....though she didn't tell us that at the time. So, Emily was given discharge papers and will be home in time for dinner.

I don't know if this is a good thing or not. This time I wasnt worried about Emily, I knew she was going to be OK, I was just mad that my Friday afternoon was gone. I feel like I am getting too used to this.

We averted a hospital trip last night

2009-11-19T18:59:00.000-08:00

Yesterday I updated everyone that Emily's ANC had fallen to Neutropenic levels and that she probably had a new virus. At 11pm when Tracy went in to give Emily her Chemo she noticed she was warm. We took her temp and she was 99.5. That is technically not a fever, you have to hit 100.3 to be considered to have an official fever. But we know Emily very well and we know that her temp usually runs around 97.7, so to us when we have seen fevers in the 99 range it has meant she was on her way up to above 100.3 levels. So we were pretty sure that within an hour or two we would be heading to the ER for blood and urine cultures, and since she was neutropenic it would also mean she would be hospitalized.

To my amazement an hour later, she was cool again. I think she fought off a virus and avoided the hospital for the first time in treatment. This means she is strong. This one isn't H1N1 since it was resistant to the Tamiflu she was on up to yesterday, it's most likely Rhinovirus aka the common cold.

I called the Oncology Fellow last night at 11 to warn him we would probably be seeing him later in the night. In that call he told me there was a study done recently that kids age 1-5 have a active virus in them 150 days out of the year. This really explains why all parents get sick when their children go to preschool. But I was surprised that is was 150 days a year .....Wow.

Emily's blood counts greatly reduced, so we reduce chemo

2009-11-18T17:18:00.000-08:00

I was surprised last week when her ANC was in the 2000's and she had H1N1. Well this week it caught up to her, and her ANC was only 630, meaning she is neutropenic. To remind my readers what Neutropenic means, at a high level. All of us healthy people have White blood cells that fight virus and infection. Emily's chemotherapy suppresses her immune system. Each week she needs to have labs and what they are looking at among other things is her Neutrofil count. Our Neutrophil count describes how many of these T-cells we have to fight virus and disease. If you have a number lower than 1000, you dont' have enough neutrophils to fight an infection or virus, and thus you are classified as Neutropenic. If you aren't on immunosuppresion and you showed up with a number lower than 1000, it would be a very bad sign. I believe HIV patients battle neutropenia as well.

So Emily is neutropenic this week,and most likely with a reduction in 6MP and Methotrexate her levels will return to "normal" or normal for Chemo. however if she gets a fever and is neutropenic it means she has to be hospitalized in an isolation room. We will probably keep her home since it's flu season.

Update about the blog

2009-11-13T08:52:00.000-08:00

Hi Blog readers. Over the past couple of days we have had some activity on the blog that I need to shut down. Somehow ad for Cialis and Viagra are being put into comment fields on the blog.

As a result I am going to start to moderate comments. What this means is if you enter a comment on Emily's blog, Tracy and I will get an email asking if we approve the comment. If we do it will be posted, if not it will be obfuscated.

While these comments are being put in really old posts and probably only Tracy and I are aware of them, I want to keep Emily's blog as "pure" as possible, because one of the reasons I am writing it, is so I can give it to her so when she wants to as an older person, she can go back and read about all she went through.

Thanks for understanding. Onward and upwards !

BTW All 4 of us have H1N1 now. Emily with her Tamiflu and vaccination was definitely the least effected so far, so if you can get one, I would really recommend getting yourself protected.

116 days of treatment left.

H1N1 and lab update

2009-11-11T13:21:00.000-08:00

Despite having H1N1, Emily's counts are totally where they should be this week, so she will remain on %100 Chemo. I am surprised to be honest, but the clinic said that with H1N1 they aren't seeing counts reduce. I read that H1N1 kills because it produces a wild response in your immune system called a Cytokine Storm, which backs what the clinic told us. At any rate despite this flu, Emily continues to do really well.

She isn't all the better from the flu but she is up, dressed and walking around doing normal "Emily stuff". It seems she is going to get over this with little trouble. The clinic does want her on Tamiflu for 10 days, which is twice the normal duration for the drug.

We plan to send her back to school tomorrow.

Celebrating 1 year on Maintenance

2009-11-10T19:30:00.000-08:00

We just realized that this week marks one year that Emily has been on maintenance chemotherapy. We can't believe it's been a year since we ended intensive chemo, and that we have been in this maintenance mode for a whole year. Maintenance mode means giving Emily a pill at 11pm every single night, waking her up, getting her to wake enough to swallow pills, and then putting her back to bed. We just keep doing this until March 10th 2010, and then we stop. There is no taper, no change, you just stop taking pills one day.

I remember Dr. Davis telling us on the day they told us Emily's official diagnosis....."Here is your protocol, you can see that every single day from now (March 2008) until March 2010 is planned out. One thing is for sure, there will be challenges along the way, we don't know what they will be, but there will be challenges, but it will work, hang in there. You may not believe this but we want to save Emily just as bad as you do."

Emily will have labs this week and next week as usual. On 11/23 she is going to be having a scheduled CT scan to take a look and make sure everything is OK. Those are hard because there is a lot of anxiety on the results. Hopefully we will have the results on wednesday the 25th before Thanksgiving.

Update on Emily's H1N1

2009-11-09T20:26:00.001-08:00

Early this afternoon we got a call from the ED at Stanford saying they had just heard back from the County virology unit that Emily's test for Influenza A came back positive. H1N1 is Influenza A and the county says that %99.9 of influenza A is H1N1 virus, so Emily is a positive for it. They had already started Tamiflu treatment in the ER, so all we were supposed to do was to continue with the treatment.

I went to Target to get Tamiflu to find that they didn't have any of it. Not only did they not have it, but Emily requires the liquid version. She can swallow pills fine, it's a dosage issue I expect that she needs the liquid. I asked Target to call Walgreen's which they did, and luckily the county had just dropped off doses of liquid Tamiflu there. Since they were from the county Walgreens could not charge me for the medication, so thanks to Santa Clara county not only did we get the medication, it was also on the tax payer.

Emily is doing REALLY well. Her only fever was the original one that brought us into the hospital. That fever broke around 6am this morning. She is conjested but not too much worse than a bad cold. I would say her energy level is a little low. But really this is very mild and at this point I am not too worried about it. Since her ANC was 2400 she is continueing on %100 chemo, even though she has H1N1.

I will have an update tomorrow.

H1N1

2009-11-09T07:06:00.000-08:00

Last night Emily started to get a fever around 11pm. Earlier in the day we could hear a new virus starting. It's really discouraging when you fight to keep her away from virus, and then she still gets one. Her fever went from 100.9, then up to 101.5. Anything over 101.2 and we need to go right to the ER to have her ANC checked. Emily spent the night in the ER while they ran tests, blood, urine, nose swab for H1N1. She has all the signs of H1N1 flu and the doctors said we will need to wait for conclusive results, but more than likely she has H1N1. The GREAT news is her ANC is 2400 so she was not neutropenic so she gets to fight this flu at home, rather than having to be in an isolation room at the hospital. She was also given Tamiflu because they are that certain this is probably H1N1 virus. She threw up her first dose so we need to give her another one later this morning.

It was amazing how calm and or numb Tracy and I are to all this. Last night when Tracy first discovered the fever she came and woke me to tell me. I was concerned of course, but I actuallly dosed back off to sleep, knowing we needed to wait for the fever to be there an hour. A year ago, I would have been freaking out, jumping to 100's of conclusions about what was going to happen to Emily, and this time, I thought to myself, let's just wait and see, she's doing so great, she's going to be fine. Now that she most likely has H1N1, I am still not too worried. Tracy and I are both a little nervous but confident Emily will fight through this like a champ. Emily was also very calm and matter of fact about having to go in to the ER. We all know the drill by now.

When we were in the ER we ran into Dr. DeSouza, who was the attending physician WAY back on March 9th 2008, and was the person who diagnosed Emily originally. He still remembers us and the day as well. He said, "next time we run into each other, let's hope it's Stanford Shopping Center".

More updates as this virus progresses.

very long scheduled day at the hospital

2009-11-04T21:01:00.000-08:00

Today was Emily's scheduled monthly IV chemo and physical exam. Our N.P. Karolina ordered a stomach x-ray again today to make sure Emily's blocked GI had resolved. We suspected it had and sure enough she is cleaned out, which is really great news. That meant that we could go ahead and continue with all the scheduled chemo.

For some reason our N.P. was really behind on her schedule today. She likely had a sick child, or a new patient, or something but she was going to be so far behind that they gave us a pager and told us to go grab lunch. Emily is on her monthly Prednisone this week and she doesn't like the cafeteria so unfortunately that led to her not eating much, yet still being hungry for the rest of the day. Her x-ray was at 11, and we finally got to have her exam at 2:30. Then after that and being cleared for chemo, we didn't hit the day hospital until 3:30 or so. I went home to make dinner for the girls when they got home from picking up Haley and having a quick play date with Olivia and Stella the girls good friends. Emily's good friend Olivia lives near my Mom who takes care of Haley on Wednesdays when we go in for labs or treatment. So one of the big things to look forward to after chemo is getting to play with Olivia for 30 minutes or so at the Haley pickup. Haley is hard enough to "control" at the hospital, but with the swine flu no one under 16 is allowed in the hospital unless they are a patient. So no Haley in the hospital I think probably until Emily is done with treatment.

We still don't have today's lab results. Karolina warned us that she was so far behind today that she might not get back to us until the morning, and for tonight just to continue on her %100 dosage. I think since she is on her prednisone it may mask the effects of her cold on her ANC, so she may skate by and be able to continue at %100 dosage this coming week. We shall see.

125 days of treatment to go.

Long unscheduled day at the clinic

2009-11-02T18:52:00.000-08:00

Emily has been having issues with constipation for a long time. I don't write about it much because I don't want to embarrass her. Today things got a little worse so we had to go into the clinic. Tracy gave Emily her morning Em all of a sudden didn't feel well and both threw up and had diarrhea, really watery suggesting there was something obstructing her GI tract. Since we've been going through GI issues they wanted to see her. After an exam and a lot of questions they decided to give her an x-ray and see if she was truly blocked. It turns out she is blocked in two spots in her intestine and the N.P. was surprised she wasn't complaining of more discomfort. We are treating her with magnesium citrate tonight. It's really important that she is un-clogged before IV chemo on Wednesday, or they may not give it to her. The Vinchristine, her IV medication, is known to cause really bad constipation and is the original cause of this complication. All the exposure to her vinchristine is catching up to her side effect wise. Luckily it's fairly easy to treat.

On the upside she was able to get a dose of swine flu vaccine. The clinic had just got 200 doses today. They didn't actually tell us, I just asked if they had some, and the N.p. seeing us today ordered us a dose. She needs to get a second one 4 weeks from now. Hopefully by then it will be a little easier to get.

Emily is back to %100 chemo dose.

2009-10-28T20:37:00.000-07:00

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

2009-10-21T19:35:00.000-07:00

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

2009-10-14T21:26:00.000-07:00

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

2009-10-08T10:27:00.000-07:00

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 !

2009-09-30T19:25:00.000-07:00

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

2009-09-24T19:00:00.001-07:00

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.

2009-09-23T18:22:00.000-07:00

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

2009-09-17T22:59:00.000-07:00

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.

2009-09-09T18:55:00.000-07:00

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...

2009-09-06T12:48:00.000-07:00

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

2009-08-27T10:52:00.001-07:00

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

2009-08-19T21:56:00.000-07:00

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

2009-08-15T07:40:00.001-07:00

Emily's counts were perfect.

2009-08-13T19:44:00.000-07:00

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

2009-08-12T21:46:00.000-07:00

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

2009-08-05T18:51:00.000-07:00

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.

2009-07-31T17:14:00.000-07:00

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!

2009-07-29T20:22:00.000-07:00

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

2009-07-28T23:42:00.000-07:00

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 !

2009-07-23T11:15:00.000-07:00

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?

2009-07-22T21:12:00.000-07:00

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

2009-07-15T14:22:00.000-07:00

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

2009-07-09T15:48:00.000-07:00

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

2009-07-01T17:27:00.000-07:00

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

2009-06-25T09:48:00.000-07:00

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

2009-06-22T10:17:00.000-07:00

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

2009-06-17T20:55:00.000-07:00

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

2009-06-10T17:44:00.000-07:00

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

2009-06-06T14:59:00.000-07:00

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

2009-06-03T19:25:00.000-07:00

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

2009-05-27T18:14:00.000-07:00

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.

2009-05-20T19:04:00.000-07:00

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

2009-05-16T22:35:00.000-07:00

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.

2009-05-14T14:23:00.000-07:00

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

2009-05-11T12:49:00.000-07:00

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

2009-05-10T21:21:00.001-07:00

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

2009-05-06T18:48:00.000-07:00

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

2009-05-04T10:42:00.000-07:00

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

2009-05-01T17:58:00.000-07:00

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

2009-04-29T13:44:00.001-07:00

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

2009-04-28T15:42:00.000-07:00

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

2009-04-28T14:09:00.000-07:00

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

2009-04-28T10:19:00.000-07:00

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.

2009-04-27T13:43:00.000-07:00

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

2009-04-27T10:43:00.000-07:00

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

2009-04-27T09:17:00.000-07:00

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.

2009-04-27T07:14:00.000-07:00

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

2009-04-23T11:54:00.000-07:00

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

2009-04-22T17:47:00.001-07:00

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

2009-04-19T21:01:00.000-07:00

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

2009-04-15T19:30:00.000-07:00

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

2009-04-12T19:27:00.000-07:00

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.

2009-04-08T20:24:00.000-07:00

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.