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.