Thursday, April 3, 2014

Emily is now 4 + years of full remission

I never update the Blog anymore because I hardly think of Emily's cancer like I used it. It used to be the first and last thing I'd stress on when I woke till I went to sleep. Now I just worry if her grades are good and how she's behaving. Emily is in 7th grade, she's 12 and she's a typical pre-teen in all it's glory. The support this blog gave me, well I can never repay any of you for it. This was great therapy for me, and a good way to communicate with you all. I will update at least one more time when she hits 5 years and is completely done with her Oncologist and goes into After Care.

Thursday, January 27, 2011

Long over due update

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 !

Saturday, October 16, 2010

Help a great cause, Team Cancer Crushers

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.

Thursday, October 7, 2010

October Update

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.

Friday, August 13, 2010

August Update

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.

Thursday, July 15, 2010

July's monthly exam.

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.

Thursday, June 17, 2010

Moving into a new frame of mind

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

Wednesday, May 19, 2010

May update

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.

Monday, May 3, 2010

Learning to live without Doctors.

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.

Friday, April 9, 2010

What's going on with Emily

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.

Friday, April 2, 2010

All of Emily's tests were clear.

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.

Monday, March 29, 2010

LLS Article on Emily

Tuesday, March 23, 2010

Leukemia and Lymphoma Society's Girl of the Year.

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.

Wednesday, March 17, 2010

Emily didn't have her labs today

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.

Friday, March 12, 2010


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.)

Wednesday, March 10, 2010

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

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.

Wednesday, March 3, 2010

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

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.

Saturday, February 27, 2010


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.

Wednesday, February 24, 2010

Big milestone for Emily

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.

Friday, February 19, 2010

Great transition from Karolina to Dr. Link

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.

Thursday, February 18, 2010

change in protocol, I need to deal with it

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.

Thursday, February 11, 2010

28 days and counting.

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.

Wednesday, February 3, 2010

36 days of Chemo left !

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.

Thursday, January 28, 2010

Second to last chemo complete, and change in team.

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.

Thursday, January 21, 2010

Resume at %50

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.

Sunday, January 17, 2010

Emily is home, quicker than expected.

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.

Friday, January 15, 2010

Hospital day 2, update

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.

Wednesday, January 13, 2010

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

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.

Wednesday, January 6, 2010

Labs are in and increased chemo seems spot on

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.