Thursday, January 29, 2009

No More Port

Emily's port removal was a smashing success today. Once the procedure started it was a quick operation and they had no complications.

We were home this morning and left for the hospital at 10:30, we had to meet my Mom at 280 and Sandhill to drop off Haley. We then went over to Packard Hospital. This time we got to experience the new Ford Center for Pediatric Surgery ! The whole process has changed and it's much, much better. They have their own admitting station, so we got to bypass the main admitting, which saves a lot of time. Before the Ford Center you had to register at the front, and then go re-register in the PACU, and then you got sent to a very crowded waiting room. Now the whole process is streamlined and they have 7 prep rooms instead of 3. Emily just had her labs yesterday so we didn't need to do that part of Pre-op. Her pre-op nurse took her vitals, asked us recent medical history, then the Anesthesiologist NP came in and asked questions about sedation and our/Emily's preferences, as well as medical history. We've done this so many times it's like habit at this point. I also noticed how non-stressed I was, I mean I was still nervous about what was going on, but deep down I really did know everything was going to be OK. Just before our scheduled time, we were told that a Pediatric ICU case was going to go before us, and we had to wait an extra 2 hours. They gave us a gift voucher for the gift shop, handed us a pager, and we were able to roam the hospital. Luckily it was 2pm and that is the time the play room opens on the 3rd floor. We spent the waiting time playing Mad Libs together, it was really fun. Just as Emily was about to start an art project, we were called back to the Ford Center to get the operation under way. For most of Emily's procedures so far we have been able to go into the Operating Room with her, but since this was a little more involved than a procedure, we had to say our good byes before she was put under. We don't care at all if Emily cries, but she doesn't like to, she tries to be really brave, we could see her eyes were tearing up, but she said "I am excited to be getting this out." We kissed her, and then we were left with an hour to kill. One of the COOLEST new things in the Ford Center is you are given a number, ours was 426. In the waiting room they provide up to the minute status of your child, tracked by the number. So we could look up and see "426 Surgery started". One of the hardest things with anyone in surgery is wondering what is going on, and we had more visibility than ever before into what was going on in the operating room. We actually went for a walk over to the adult side of the hospital and back, they called us in because the surgery was done, and she was in the process of waking up. When Emily's eyes finally opened and she looked my way, I noticed that she didn't look directly at me, rather she looked at my backpack, and I knew why. I had her Chex Mix in my backpack, and I knew she was extra hungry. They made her drink some juice first, but they allowed her to eat almost right away. After about a half hour they disconnected her from her monitors and we headed home. It was a long day, but went pretty much perfectly. We are so proud of Emily and happy she doesn't have a port anymore, no one should have a port, but definitely a 7 year old.

I mentioned that Tracy and I went on a walk while Emily was in surgery. We walked all the way from Packard to Stanford, the hospitals are connected in fact if you aren't paying attention you don't notice when you go from one to the other. It's a very large building. Tracy wanted to poke around the gift shop and we got a snack. I am not sure why this happened today but I started to get this feeling of "I can't believe my kid has cancer." To me it seems odd, because we have been going through this now for 11 months, it's become our lives, but I think this demonstrates that you never get used to it, and that there are many levels of feelings, some I have dealt with and some obviously not. It's just so unfair, why does she have to go through this? How she does it with such a positive spirit is amazing. She doesn't feel sorry for herself, she just looks this disease straight in the eye and keeps reminding us "I'm not worried, there is a cure." Recently she told me "Now that I am in remission Daddy, I think you can stop worrying I am going to die." I am quite sure I have never said to her that I was worried that would happen, but she can tell, she can read me like a book. This kid can reassure me, comfort me when I am sad, and keep me smiling through some really tough times. I've said this before but I never thought I would learn so much about living, and what is important, from a 7 year old, but indeed that is what has happened. I really look up to her. I also know that it's a two way street and Emily feels so confident because she knows her parents love her more than anything.

Tracy and I want to thank everyone for the extra level of support this week, you all made a huge difference. When we are in those waiting rooms, my on my blackberry and Tracy on her I-phone all the emails, comments etc etc really help, we feel blessed to have such an amazing support system. I hope each of you know that I mean this more than I can really say.

If everything goes as planned that was the last time Emily will have surgery in her therapy.

Wednesday, January 28, 2009

Em will get her port out

IV Chemo and labs went well today. All of Emily's levels looked good and her liver and kidney functions also looked good. She also had all of her clotting factor tests completed and she is cleared for surgery tomorrow . As I was typing the last sentence the Resident who will be assisting the Attending physician called and talked to me about the procedure. It's only going to take a half hour, and there is a very low risk for complications. Emily is nervous, Tracy and I are too, even though there is low risk, it's been a while since she has been put under, and it's not something that you get used to. I am hoping we get to use one of the new state of the art pediatric operating rooms that were just completed last month, they are absolutely amazing and all built with a grant from the Ford Family Foundation. I know we are in good hands. We have to show up at 11:30 and the procedure is schedule to start at 1. Emily and I made some Jello which she can have for breakfast.

Emily also had her physical exam today by Karolina, our NP, and Dr. Link. They both thought she looked great and is on track with her cure. They asked us if she was catching up in school and how she was doing socially. I like that they are concerned about all these aspects of her life. I am also always amazed at how many people in the hospital know Emily by name, it seems like every corner we turn someone says "Hey Emily, how are you? you look great" I like how they talk directly to her when they ask questions, they have so much respect for these kids. It's heart warming.

I will have a more in depth update tomorrow after surgery is complete.

Tuesday, January 27, 2009

Getting ready

We are getting ready and planning for two hospital days back to back. Tomorrow afternoon Em will have labs and chemo, and then on Thursday the port removal surgery. Emily is a little nervous about the surgery but mostly excited about having her port out. She sees it as returning to a "normal" kid. We are excited about the lower risk for blood clots and the obvious risk analysis the doctors must have done to decide they wanted to take it out. They wouldn't put her through unnecessary surgery, so this is a great sign, I can't say it enough.

Emily is doing really well in school, today she is giving her first oral book report, and she's a little nervous. Emily also auditioned for the Second Grade performance for a dance role, and she got it. At first she was selected as an alternate, which she was happy about, and then two days later even more excited when she learned she had moved from alternate to a starring role ;-) She will be dancing to John Denver's "Grandmas Feather Bed", which I used to play in guitar class when I was a child. I need to find the sheet music so she and I can practice at home.

Tracy and I are still in the process of trying to get our lives back in order. Tracy is looking to increase her work hours, we are trying to find out how much more she can work, and for us to still get everything done. This weekend I also planned a few vacations for the year, something for us to look forward to. In early May, Tracy and I are going to the New Orleans Heritage and Jazz Festival, which will be our first real trip away from Emily since she was diagnosed. It's a really big step for us.

Saturday, January 24, 2009

Surgery and IV Chemo this week

Emily is going to be having her IV Chemo on Wednesday this week, and then surgery to remove her implanted port on Thursday. Unfortunately they can't do them on the same day. We will let Emily use her port for this Chemo one last time before they take it out. To remind some of you, Emily had a port implanted under her skin in the middle of her chest. The port has a cath that goes directly into her Artium valve of her heart. This allowed her to get IV medication much easier, and much more directly into her system than any other method. So, why are we removing it when she still have 13 months of IV chemo to go? The answer is that while a port is a nice convienince they also have a blood clot risk, so the Oncologists have perform a risk assesment when deciding how long to keep a port in. When Emily was gettting IV medication multiple times a week, along with Blood tranfusions and other blood products, and having her labs drawn 2 and 3 times a week, it was an easy call to make. Her poor little veins would have been a scared up mess if we didn't use the port. As you will recall she also had a very large blood clot stopping all blood flow, about an inch from her heart. So knowing she clotted once, and they they do not need to be giving her as much IV treatment, Dr. Link really wants to take it out. The way he explained it to us was simple, "Chris and Tracy, imagine how guilty you would feel if there were a bad complication becasue we left the port in for convienince." So this Thursday they will be taking it out. It's a real surgical procedure where Emily will have to have a breathing tube inserted and will be put under for, deeper sleep than her LP's. They explained that it's very routine surgery, and the most complicated part will be "disecting her tissues away from the port line" which is hard to hear but makes sense. We will be very relieved once it's out, it's probably the biggest risk she has going on right now. Her recovery will be fairly quick, they anticipate sending her home the same day. she will have some pain for 3 to 4 days and they will control that with narcotics if she wants them. Emily doesn't like codine so I expect she's tough it out probably more than she has to, but we respect whatever decisons she makes along the lines of pain managment.

Emily, Tracy and Haley are up in Auburn today visiting Grannie Carol and Grandpa Steve. I got a text message from Tracy that they are up in the snow and sledding today. I bet they are having a blast and I will post some photos I am sure will be taken. Tomorrow Emily has a Girl Scout Gymnastic event to attend tomororw which she is also excited about. Her ability to stay active, and to be so brave around other kids is amazing. Remember EVERYWHERE Emily goes kids stare at her, and she's fully aware. For the most part I do not fault the kids who stare at her, I understand why they do, you don't see Cancer patients very much, much less ones who are leading an active, aparently very happy life, I just hope they learn and don't joke about her, but that's there problem if they do. The amazing part if Emily doesn't really care what anyone thinks, she just wants to get the most out of what she's doing.

Wednesday, January 21, 2009

Another roller coaster day, but she's back to %100 dosage

On my last post I mentioned that Emily had developed some acne looking marks on her face. Over the past few days they started to get worse. Last night they spread from her face to her ears and we really started to get concerned. It looked much more like a medication allergy than acne. And finding something like that late at night, Tracy and I let our thoughts get ahead of ourselves.....would they have to switch drugs, stop treatment etc etc etc. And to make things worse we started looking up side effects on the web for 6MP, the main drug in her treatment. We had made a doctors appointment to have her seen for this anyway today so we were seen this afternoon. What they figured out was she is probably having a normal side effect of 6MP and not an allergic reaction. It also could be a common reaction they see from having 6MP and Septra concurrently. These are all common things they see often and none of the medical staff seemed to be too worried. They also were totally understanding of our concerns and they took the opportunity to educate us more on 6MP and her treatment. I was really happy I went to the appointment and got to ask my questions, I can sleep better tonight.

Emily's lab results today were great, she's back to %100 dosage.

While we were at the hospital we got a chance to see the new 1 North Oncology and Stem Cell Unit that just opened yesterday. Each room is private, with 2 day beds for parents. Each room also has a Nintendo Wii to keep the kids busy while they have to be in the hospital. It's a very nice patient unit, but I hope we never get to experience it. It was built be the Bass Family Foundation. They explained to me that they will be located in the new center until the entire hosptial is rebuilt, several years from now. There is a big battle going on between Stanford Medical Center, the City of Palo Alto, and Stanford Shopping Center. The hospital wants to add 550 patient beds (between Packard and Stanford Hospitals) and the Shopping Center wants to build a new flag ship store location and a large hotel. Palo Alto knows the area can't handle all the cars, so there is the dilema. Do they allow more shopping or more space to save lives....gee I think I know which they should choose, but I think we all know the mighty dollar will dictate what happens. I got all this information because I happened to have met the Director of Care Services for the Cancer ward today. When she told me about this battle with the City and Shopping Center. She could tell that I really care about this and invited me to show up at the next planning commision meeting and explain to the public what an impact the hospital has had on our lives, telling me that hearing it from a parent of a patient holds a lot more weight. She gave me her card and also mentioned she sometimes takes parents traveling with her on her road shows for funding. I have her card and plan to follow up, I have been looking for an opportunity to make a bigger impact. We will see how it plays out.

Monday, January 19, 2009

Jan 19th.

We didn't do a heck of a lot this holiday weekend. We planned to take it easy and we did. Tracy and the girls did go on a hike today to with our friends the Michaels to Castle Rock in the Santa Cruz Mountains. They had a great time and the weather out here has been fantastic for about a week now. I hate to think of the major drought we are going to have this summer, but I have to admit 73 degrees in January is kind of nice.

Emily is doing really well. About a week ago she broke out with some pretty heavy acne, and we need to check tomorrow to make sure it's an acceptable side effect of the chemo, we feel like it probably is ok since she feels great and the acne seems to be just that. I also remember acne being a side effect of several of the drugs she would be on. Emily is also scheduled to have labs on Wednesday and we are expecting to return to %100 dosage on her chemo, it's been 6 weeks since she was neutropenic and we had to take a break and just now working back up to full dose. The worst of the cold season seems to have passed, especially since everyone is outside with this great weather.

While Emily is doing great, and we are so thankful for it, I want to try to explain what it's like to be a parent at this stage of chemo. It's a mix of feeling and emotions, some justified and some maybe not. We feel happy and excited that Emily is doing really well, but we feel worried and scared that things could change, any day. It's the constant worry that we need to learn to live with, it's something that isn't going to go away March 10th 2010 the day she ends treatment. It's probably a worry that will never go away. I am personally conflicted with how to feel about things, do I get excited she is in remission, knowing full well in the back of my mind that this disease is known to relapse, and just getting into remission isn't the challenge it's if you can stay there. At work, I want to tell my boss and team that everything is getting back to normal, but I worry that if I do, then expectations will raise on my performance, and to be honest I don't have much energy to step it up at work any more than I have done already. I get angry when people at work say "we understand what you are going through" when they really have no clue, and I don't want them to have a clue. So even in good times, I want you all to know that we still need all the support, help, comments to the blog etc to get through this. It's just not as dire as it was last spring, but there is still a major battle ahead of us.

We are super excited that tomorrow our country is going to get a fresh start with a real leader. I am hopeful for so much, but here in the blog I will say that it's almost guarenteed that President Obama will do more for health care that bush, let's hope for increased stem cell research, advancements in technology to help not to kill people, and a way for everyone to have medical care on par with what we are so fortunate to be able to give our daughter. I am looking at 2009 as a year of healing, for the Emily and the Peppers, our enconomy, and counrty. I am full of hope for that. I also believe it can happen.

Saturday, January 17, 2009

donating Girl Scout cookies

Just wanted to quickly add something that some of you might not know: There is also an option to donate boxes of Girl Scout cookies to your choice of three different charities (the Red Cross, a local food bank, or military troops), and Emily would still get credit for selling the cookies. This option might be good for some of you who would like to support Emily, but would rather not have boxes of cookies calling to them from the cabinet in the middle of the night. This option might also work for some of you who don't live nearby and would like to support Emily.

If you would like to donate some cookies to charity, go ahead and fill out the order form below. (One of the choices in the first drop-down menu is to donate to charity.) We will contact you with details.

I want to also add here that I sincerely appreciate all the support you all have given us these last 11 (gasp!) months. It means more to me than I can express in words. I can't believe it's almost been a year since Em was diagnosed. So much has changed, but Chris's nearly daily posts and your comments have been a source of consistency for me. It helps so much to know that there are so many of you out there who are thinking of Emily and of our family. I can feel the good vibes you all are sending!

Wednesday, January 14, 2009

Weekly lab update and cookie order form

Emily had her weekly labs today. The results were good and we are staying on the %75 dosage of her chemo for another week, as the protocol calls for. Emily seems to be feeling well, she is fighting a cold, like the rest of us, but it doesn't seem to be tanking her ANC, which was around 2000 today, last week it was in the 3000's to compare. There really is not anything else to report medically about Emily. We are just pleased with her progress and amazed with her courage.

Last night Emily and I were lucky to have access to two San Jose Sharks tickets. We had a great time at the hockey game and the Sharks won 7-1 in a total blow out. Emily really wants to go to another game so I am glad she liked it.

This coming weekend is a holiday weekend, but we will be staying near home, Tracy has to work on Sunday.

Also if you are interested in ordering girl scout cookies from Emily, I've created a simple order form you can use.

Saturday, January 10, 2009

Girl Scout Cookies and Hair Comment

This week Emily started her girl scout cookie sale. For me, there is a big connection between girl scout cookies and Emily's cancer diagnosis. As you may recall on the very first post of this blog, Emily was out selling girl scout cookies the day she was diagnosed. Right now she is doing the pre-sale so it's not quite a year, but it means we are coming up on 1 year since our lives changed profoundly. Just before I started writing this post, I looked out our front window and I saw Emily at a neighbors (with Tracy), with her little girl scout vest on, selling cookies. It's absolutely amazing how much better she is compared to when she was so sick all summer. I didn't think she would bounce back like she has. Medicine has given us Emily for a year that we wouldn't have otherwise had, and wow that's heavy to think about.

On a lighter note, this morning Emily and I went to Pet Mart and bought two new cat fish for her tank. Her cat fish Leah died a few weeks back but today was time to replace her with two, smaller and friendlier cat fish. As we were getting help from the woman in the pet store the clerk asked Emily "Is that a Pixie haircut?" It made Emily's day that someone thought she had intentionally cut her hair to look like she does. Emily also told the clerk the truth about her hair too, but on the car ride home she said she wish she had not said anything. Our lives are returning to normal, at just about the same rate Emily's hair is growing back, funny how that works.

This coming week Emily will have labs on Wednesday. We expect and hope that she remains on her %75 dose as the protocol calls for, and then return to a %100 daily dose the following week. The biggest risk to that right now is Haley who some how caught another cold. Emily is so strong right now I really doubt this week the labs will be an issue.

Wednesday, January 7, 2009

Weekly Labs results and more

Emily had an ANC in the 3000 range, which means she can increase her chemo dose to %75 of normal, per her protocol. All her other levels looked great as well. She's doing wonderfully. It is looking like her surgery to have her port removed will be on the 28th. They are working on scheduling her. There really isn't any other medical news to report.

Above I mentioned her "Protocol" and want to explain a little more about what that means. When you are diagnosed with Cancer they do a lot of tests to determine the best treatment. Many things are taken into account when they make this decision, age, gender, what stage the cancer is in, what organs, other genetic markers I don't even understand also play into the decision. Even for a disease like T-Cell Lymphoma, there are several possible treatment Protocols that can be considered. Once the diagnosis is made, and the staging and other tests come in, the Oncologist chooses the Protocol that has the best chances for the treatment of the patient. So Emily's protocol has a specific number which Oncologists can refer to, for almost any situation that comes up. There is a bit more complexity to this as well. After they decide which protocol you are on, you are either put on an official study or not. For Emily she was not put on an offical study. At first this made me nervous, but when I learned more I was relieved. First of all if you are on an offical study they have to draw twice as much blood each time you have a lab draw. This is because one sample would be sent to the lab, and the other would be sent to the research team running the study. You also have to have more CT Scan and more overall radiation as part of the study. Since Emily isn't offically on it, it is at Dr. Link's discresion if he follows the protocol or not. For example he decided that if her CT scan is clear, not to do a PET Scan, to save Emily from radiation. Emily's Protocol is really old also, which is good because it means its effective, the old addage "if it works, don't fix it" applies. So there is a good guide for us, that is based on many people who have fought this battle before, and won.

We don't have any big plans for the next few days......but who knows what we'll come up with this weekend. This year we are going to get out and do even more than last year. I am working on a ski trip in Feb, a trip to San Diego in March, and a camping trip to Yosemite in June, plus a few other ideas I'm following up on.

Sunday, January 4, 2009

Cal Academy of Science

Today we went to the California Academy of Science. They reopened in the new building I believe back in late September. It is really crowded still, we had to stand in line for 45 minutes to get in, and the place was at capacity. It was fun, but it was really too crowded to fully explore the place. Haley hadn't had a nap either, which wasn't working for us either. There is a lot we didn't get to see this time. I think it will be a good 6 months maybe another year before the crowds settle down. There is a contained rain forest exhibit that looked amazing. We mainly checked out the fish. Emily liked the Moon Jelly fish, the Sand Dollars, and spent a good amount of time at the interactive tide pool where she touched Star Fish, and Sea Anemone, and other creatures. They have an amazing tropical aquarium that is two stories high and I would guess 40 feet wide. Instead of parking in the Park, which was a nightmare, we drove up the N line of the Trolley and took the Trolley back to Golden Gate Park. Haley laughed out loud on our first ride, it was really funny and made us all laugh.

Yesterday Emily finished this month's course of Prednisone. She did really well on it this month, no big mood swings, and her food cravings were reasonable and relatively few. Today she seems to be coming down with another cold, I really hope she is able to increase her chemo back to a normal dose, but the blood test on Wednesday will determine what we need to do.

Besides this cold, Emily is doing really well. Her spirits are high, and she reports to be feeling great. She does have constant mild stomach pain/upset which seems to be a side effect of the chemo, but it's manageable and not something that she even talks about unless asked by her doctor. Her hair is coming back in very nicely and fast. At least once a day I say to her "Gosh, you have a lot of hair" which she loves.

On Wednesday she has her labs and we will find out from her NP about the dosage of her chemo, with the hopes to go up to %75 of normal. With her cold though, she could potentially go on a break again, we are prepared for whatever the protocol tells us to do. We are also going to ask to schedule her Port removal surgery, I am guessing sometime this month.