Emily is excited about our trip.

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

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

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

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

Trip to the ER, with a good outcome

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

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

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

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

Wednesday Labs are in

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

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

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

March Prednisone flash is over

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

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

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

Great exam and xray results. (250th post)

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

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

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

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

Ski trip to Tahoe.

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

Emily's levels have come back

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

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

Overall things are looking better than last week.

Update on Emily and a primer on ANC

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

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

3am trip to the hospital

Emily woke up Friday with a sore throat that didn't go away all day. Knowing that her ANC was 510 on Wednesday I was pretty sure we'd end up in the hospital with symptoms like that. Sure enough this morning at 3am she was burning up with a fever of 103.1. VERY high fever. We rushed her to the E.R. at Stanford so they could take blood and urine cultures, and to check to see where her ANC level was. Emily threw up in the car ride up to the hospital. I stayed home with Haley and Tracy and Emily went to the hospital.

They got seen right away. Her heart rate was also really high, at 150. They took her blood, and started an IV. They were able to access her vein on the first attempt which was nice. After they took her blood they were able to give her some tylenol. We aren't allowed to give her tylenol at home because it could mask a fever, but since they had taken her temp and blood, they were able to give her some.

The good news is she turned out to not be neutropenic, her ANC had shot back up to 1500, so she will be coming home this morning and can fight whatever she has here at home. They are keeping her a little longer to bolus some IV fluids into her to try to slow her heart rate a bit. The bolus was optional but Tracy and I both thought it was a good idea. If she has to go through the ordeal of getting an IV start, why not use it, and get the benefits of quick hydration.

To me it seems like every time we celebrate how great Emily is doing, we get reminded that she's not better yet, and we have a ways to go before a simple fever that most kids get isn't a big deal, for the next year at least they will be big deals. I am so pleased she wasn't admitted this time.

Not the best lab results today, we need to reduce dosage

Today was our usual day to get labs and we got results that were not what we expected. Em's ANC is at 510 which means she is borderline neutropenic and as a result we have to reduce her Chemo dosage. She's just 10 points away from full neutropenia we have to act as if she is. What that means is her immune system is over suppressed so reducing the dosage of her medication should hopefully get it back within the levels they like to see. You worry if it gets too low, and if it gets too high. If her levels drop anymore than what they read today, she would halt chemo all together and wait for the anc to regain it's level.

What does this mean? It means Emily can't be around sick people, and the best way to control that is to not have her around large groups. The tough part is tomorrow is the Second Grade performance which she is in, and really looking forward to, but really we shouldn't let her go. We are going to call her Nurse and see what she advises. Maybe she can go in for the performance and then leave? We will see. It's really upsetting that this is happening at all, not to mention right before something she is really excited about. It's also scary to think about why her ANC dropped to some pretty low levels. And the last time this happened, she ended up in the hospital. The roller coaster of cancer continues.

We will have to wait and see what happens, I had a nice break from worrying. We've been here before and I am hopeful she'll rebound soon. Let's hope she can make her performance tomorrow, it's going to depend on what the doctors say.

UPDATE: Emily's NP got back to me via email, and Emily WILL be able to be in her second grade performance tomorrow!

1 Year

Today is the one year mark of when Emily's life and our lives changed forever. March 9th last year was on a Sunday, and the day started like almost any other day. Emily had what we thought was an ear infection that wasn't going away, but we still let her go sell Girl Scout cookies in front of Albertons with her troop. I still remember not wanting to take her into urgent care because I was thinking that whatever she had "wasn't that serious." I remember the reaction of the Doctor at Palo Alto clinic reacting when she didn't hear Emily's left lung, and the alarm the X-Ray tech had when he saw her film. I also remember trying to take a picture of Emily on the stretcher as she was being loaded into the Ambulance, thinking it was almost "fun". I had no idea that we would be staying in the Pediatric Oncology floor that night. No idea really what Lymphoma was, and how this whole event would shape our lives. Emily's heart rate would climb to the mid 150's that day and stay there for 3 or 4 days. It was unbearable. I remember figuring out that she had a tumor by listening to the Doctors and nurses in the ER, and staying in denial about it. They were saying "her films aren't showing layering." I remember not wanting to tell her what floor she was being admitted to, because "maybe it's a mistake and she just has an infection" I remember her slipping and Tracy telling me "We are going to lose our baby." I remember going outside to take a break, and calling one of my best friends, Guy, who I knew would rally my network of friends, because I knew we were going to need support. I remember feeling scared and hopeless, and seeing that same expression on Tracy's face, and my Mom's face, and later when Grannie Carol and Grandpa Steve showed up. I remember walking outside of the E.R to a cluster of Televison vans and wondering what was going on, it was the same day that a Santa Clara Sheriff had fallen asleep at the wheel and killed two bicyclists. I also remember telling myself that there were people having a worse day that me, the parents of those two bikers. I remember going home very early on Monday morning, leaving Tracy and Emily at the hospital, and seriously wondering if I was ever going to see Emily alive again. To me, cancer was a certain death sentence. The next 4 to 6 weeks were the roughest I have ever experienced in my life, and I have had to deal with some pretty unpleasant things.

March 9th is just not a happy day for me to remember. However, there are a lot of amazing things that have happened since Emily has been diagnosed. We are blessed to have some of the best medical care in the world. Emily was able to go into remission on their first attempt, and to date she has stayed there. We were able to do a lot of things as a family despite dealing with Cancer, Blood Clots, and Chemotherapy. I feel like we almost did more things and were more out going than we were before her diagnosis. When I look back at our pictures from our Tahoe trips over the summer, Emily looks so sick, but she was still able to travel there, and to have a really good time. She went through so much during her first 9 months of treatment, she taught us all a lot about being brave, and how one can make the best of a truly challenging situation. She dealt with her baldness in a very mature and matter of a fact manner. I am proud of Emily, and also proud of Tracy, Haley and I, for the way we have dealt with this change in our lives.

I hope this next year goes as well as this past year. There will be challenges for sure and we are ready for them. I haven't said it in a while in the blog, but again I wanted to thank each and every one of you for keeping up with Emily's care, for your support of her and for Tracy Haley and I, we would have had a much harder time without it. I have posted 245 posting on the blog and had at least 30,000 page views on it. It's been very helpful to me to get my feelings out, and I hope it's been helpful and inspirational to you. This next year I plan to volunteer and give more back to help fight cancer, and raise awareness, I hope you do too.

Emily still at %100

Today was Emily's lab day, and her results were all in line to keep her at %100 dosage for at least another week. Her ANC was pretty low at 1100 but that's not neutropenic and hopefully will rebound a bit since it's close to the line you dont' like to drop below. She had a lot of nerves about getting her blood draw today since last week's chemo was rough, but she made it through like the hero she is.

Tomorrow night Emily and I are going to the Sharks game at the HP Arena in San Jose. I am looking forward to a great hockey game, we had a great time when we went before and I expect we will again. I love going to events with Emily and she's quite the Sharks fan.

Overall Emily is doing great and so are Tracy, Haley, and I.

Monthly Prednisone

Today was the last of 5 days of Emily's monthly Prednisone blast. For whatever reason it really effected her this month, both in mood swings and eating binges. She ate so much her stomach is distended this month. And she was going from being happy to screaming mad almost in cycles. I am happy it's over for another 3.5 weeks. Prednisone is an amazing drug, useful for so many things, but comes with it's share of side effects.

Emily and I are seperating her cooking orders so she can start delivering them this next week. She and I are also going to another Sharks game this week which should be a lot of fun. She will also have her labs on Wednesday.

We are coming up on March 9th, which marks one year since diagnosis. I don't know how much that date means to Emily but it's a big one for Tracy and I. I think it's going to be a hard day and week for me. I am glad Emily is doing so well or it would be an even tougher day, but in a way I feel like a big part of me and our family was taken away on March 9th. I have and will remain to be positive about all of this because being strong is holding us together, but it's hard to do when the future is so uncertain. Should I be happy, scared, sad, probably all of the above.

On this past Friday I met with Sherri Sayer who is the Chief Government Relations officer for Lucile Packard hospital. She and I talked about ways I can volunteer to help with their initiative to get funding and approval for a new childrens hospital in the future. It's going to be a good project to work on and I am looking forward about speaking about how important it is to have a place like it in our community.

Monthly IV Chemo, High School Musical on Ice, Girl Scout Cookies, and Beads

Today was Emily's monthly IV Chemo, labs, and physical exam. Everything went really well, she had her exam first and both her NP and Dr. Link thought she looked great. Most of their questions were around how Emily is doing in school and if she is having enough energy to be running around and playing. They were really pleased that she was up skiing last weekend, and that she's doing so well in school. Her labs were in line with expectations so she will remain on %100 dosage for at least the next week. Next month they ordered a chest x-ray so we can have a look what is going on inside. Every 3 months she will either have a chest x-ray of a CT Scan to keep monitoring her. They do not plan to do anymore PET Scans unless they see something that concerns them in a CT Scan. Her labs and IV Chemo went well, but they had to poke her twice because they missed the vein on the first attempt. Emily was very brave as usual and we were so proud of her.

Tonight Emily is at the HP Pavilion in San Jose watching High School Musical on Ice. Santa had left her tickets in her stocking and tonight is the big event. She is really excited and her seats are on the ice so she will be up close to the action. After the ice show, one of the stars from High School Musical, Corbin Blue, is going to have a mini concert which she is also very excited about. I am sure she and Tracy will have fun.

We are picking up the Girl scout cookies, so if you ordered them from Emily she will be delivering them soon, also if you are still interested in ordering some, let us know. Thanks for all your support on the cookie sale, Emily was a top seller in her troop, and some of the proceeds go directly to her troop.

I sent a link of the video I posted last week to the founder of Beads of Courage. She was so moved by Emily's video, and wrote back to me to thank me for sending it to her. She told us that sometimes she feels so removed from the kids who are in the program and my video helped to remind her why the program is so important, I was glad I could show her just how important the program is to us. She also offered to send Emily a special "remission bead" and a Beads of Courage T-shirt.

Ski weekend

This weekend we were up in Truckee CA, which is very close to Lake Tahoe and right next to Donner Lake. Last weekend in the storm the area got multiple feet of new snow, which made for great conditions for playing in the snow and getting some skiing in. We were staying at a home which was perfect for a nice cozy weekend. We are so grateful to the Hansens for the use of their home !

When we arrived we all got on our snow clothes and went outside to play in the snow. The house had two snow ball makers, which I had never seen before. Emily and Haley had a lot of fun playing in the snow. We also made a "snow fort" which some shovels. On Saturday Emily and Tracy went skiing and Haley and I stayed at the home base. I love to ski but since Tracy and Emily are at the same ability level, we thought it would be fun for Tracy and Emily to take a private lesson together. Unfortunately Tracy twisted her knee so her day ended early, but Emily completed the lesson by herself and had a great time. She was so happy and proud of herself at the end of the day. It put the biggest smile on my face.

Today we woke up to snow falling, though it's a pretty warm storm so it's not sticking to the roads too much and I am expecting a relatively easy drive home. Having gone to college in Colorado I am very comfortable driving in snowy conditions.

Looking ahead to the week, this is Emily's week for IV Chemo and her monthly course of Prednisone. She will also be seeing Dr. Link and having her labs drawn.

Emily talks about her beads

I wanted to post a new video to the Blog, it's been a long time since we have done that. You can see from the video how great she is feeling these days.

Today she had her weekly labs drawn, and the results were in line with what we expected. She will remain on %100 dosage of Chemo. Her platelets were also high enough for her to go skiing this weekend ! She's going to do a half day lesson and then hopefully ski with me the second half of the day. I intend to get video of that too, at least some pictures.

Nothing to post!

For the first time in about a year, I have no updates to post. Emily is doing great and enjoying her week off of school for Presidents week. She has labs tomorrow and I will have an update after we get results. I missed updating the blog so just thought I would post and let you all know we are doing great.

Emily's Labs

Emily had her labs drawn yesterday. Everything looks to be ok, her ANC was low at 900 though. That's a good and possibly concerning thing at the same time. At 900 she doesn't have much to drop to be neutropenic, which we don't want to happen, but at the same time consistent high ANC is a sign that something could be going on cancer related. So seeing the drop is actually reassuring to us. It also means she's probably fighting a virus, which at this time of year is pretty standard. We are having a dinner party of 18 people over tomorrow night, so that's the big plan for the weekend. Next weekend we are going skiing.

Follow up

No real updates on Emily, she is doing great and will have her weekly labs tomorrow, and I will have an update.

Yesterday I got an email from the CGO (Chief Governance Officer) of Lucile Packard Hospital and she wants to take me up on my offer to be parent spokesperson on behalf of the hospital in their battle with Palo Alto to get clearance to build the new Hospital. To remind/update you, Stanford Medical Center, which is comprised of Stanford Hospital and Lucile Packard Hospital wants to build an entire new facility. While Stanford is a world renowned medical institution, the facility is dated. I can attest to that because Tracy has worked there for years in one of the old wings. Lucile Packed hospital is much newer but it's just too small, which I can also confirm from our in patient experience this past summer. The Pediatric Oncology unit which just opened is great, but still really too small. Let's face it, more kids need to have the care Emily is getting, I can not imagine being told, "Sorry, we don't have room to cure your child." but it could and probably does happen.

When I was touring the Ford Center after it opened, just walking the ward my myself I struck up a conversation with the Director of Patient relations and she told me all of what I just wrote above, and I told her, "if there is anything I can to help, please let me know" She said yes you can help, and she gave me her contact information. I followed up with an email and that's how this got started.

I believe what they want me to do is come with their delegation to the Palo Alto planning commission meetings on this matter and to give a heart felt testimonial of what Packard Hospital has meant to me. That will be easy, and if she wants tears I can easily conjure those up, I'll just bring a power point of picture of Emily's life, and talk about her and the diagnosis and treatment. I think we all deserve a updated hospital rather than a bigger shopping center and a new hotel. Honestly I can't imagine this is an issue. I know what it's like to need it. But Palo Alto probably wants the tax revenue of the new Mall. They also won't allow buildings over 5 floors I believe, and there are some real issues with traffic and the roads that need to be considered, not to mention we're in hard economic times. Those are the real, some some legitimate issues pushing back on the expansion.

I am so excited they want my help, I hope I can help make a change at this level, something that really matters.

All is well

Emily is continues to be doing great with her treatment, and is getting to have a lot of fun. This week our friend Kim called and offered us their tickets to the San Jose Sharks game. Emily had been to a game with me earlier in the season, and she was excited about going to another one. This time though, she wanted Tracy so that's what we did. I watched the game from home so I would be able to talk about it with her. She likes hockey, the games are really fun to go to. San Jose has the best record in the NHL this year. Every year the Sharks sell their season out, and there is so much energy at the games you really are lifted by it, it's quite an experience. Kim also loaned Emily a Sharks jersey to wear to the game, which you can see in the photo above.

On Thursday night I forgot to give Emily her chemo, and Thursdays are 6MP and Methotrexate day, so it was a big miss, but luckily we realized at 5am when Tracy got up with Haley so we were able to give her the dose and not have an effect on the week. We do our best to set alarms on our phones and calendar software but it's so easy to forget even something that important. When I went to bed I remember thinking I needed to give her the pills but was distracted and forgot. Its the first mistake in well over 6 months, which is the good news, normally we've been on time for everything.

Emily's pill schedule. I mention pills but here is the drill. I am going to mention the number of pills not the dosage, just to give an idea of the quantity of pills. On Monday - Friday she takes 1.5 6MP pills 2 hours after eating dinner. On Thursdays she take 7.5 Methotrexate pills. On Saturday and Sunday she take 1 6MP pill, and 2 pills of Bactrim per day. Every 4 weeks she also adds Prednisone to the cocktail for 5 days, taking 4 pills 3 times a day. That repeats itself over and over until she is done with treatment. She also gets 1 IV medication once a month, on the same week she takes the Prednisone. I often think of it as a cocktail treatment like you hear of patients living with HIV.

Emily has a little cold still but overall seems to be healthy. She will have her labs this coming week and that's all we expect to have to do medically.

Wednesday Labs and a few tibits

Emily has her weekly labs today. We were a little worried because she had developed some sniffles recently, and hoped that wouldn't lower her ANC. We got the results tonight and there was nothing to worry about, Emily's labs looked right on track. I don't normally post the results, but for those who are interested these are the main levels we track. Please keep in mind if you go on the web to see what normal levels are, that Emily is on immuno-suppresant therapy so her "good" levels are not "normal. Her White Blood Count (WBC) was 3.6, Hemoglobin 11.1, Plateletes 300,000, and ANC 2600. These are all perfect as far as we are concerned. She will remain on %100 dosage of 6MP this week.

I have been asked a few times during Emily's treatment how common or what is the incidence of NHL T-Cell Lymphoblastic Lymphoma. I finally have an answer from her NP. I didn't realize how rare her disease was. In any given year, between 40 - 50 females between the ages of 5 - 18 are diagnosed with it. That means there are roughly 600 girls in the US who have it and the US has around 300 million people. There are around 400 cases per year in males of the same age range. It's very uncommon to get at all, and very rare for females. However in Africa about %50 of the diagnosis are NHL. Why Emily had to be one of the 45 last year is hard to even fathom or accept. Luckily the treatment for Leukemia works for Lymphoma, because drug companies are not going to invest in a treatment for a disease that effects so few people, that's just the sad truth.

We don't have much planned in the next week and a half, but last night we lined up a ski trip to Tahoe Donner for later in the month. Emily's Oncologist is also a ski addict like myself and he once told me his daughter is his "ski buddy" just like Emily is my "Ski Buddy" We are really looking forward to the trip.

Feb 2

I can't believe it's February already. It has been just shy of 11 months since Emily's diagnosis. It also means we are just 13 months away from treatment being over.

Emily recovered very quickly from her surgery last week. On Friday she even asked if she could go to school because she missed her friends. She was in school less than 24 hours after surgery for which she was heavily sedated. Simply amazing that she was able, and almost more amazing to me that she wanted to go. I am glad she wanted to though, and we had checked it with the surgeons the day before to make sure it would be ok. She only lasted 2 hours, but that was more than enough in my book.

Over the weekend we went on a nice hike, and had a picnic with our friends the Woodmans. They had not seen Emily since just weeks after her diagnosis, when she was very pale, couldn't walk, and was very puffy from the high dose Prednisone. They were not sure what to expect when they showed up, and were in complete amazement at how well Emily was doing. She was running around full of energy just like the Emily they have always known. They were really blown away. Emily did OK on the hike, she got a little bored so she and Katina lagged behind, and Haley actually out hiked all 3 older kids. After the hike we all went to a movie. Emily had so much fun playing with her friend Owen, they have known each other since they were infants, Tracy and Katina were in the same Mommy's group. Above is a picture of Emily and Owen when they were around 3 years old, and then the second one was this past weekend.

This week we have labs, and hopefully that is it. Emily has a scratchy throat but we think it's from the breathing tube in surgery. We finished this months Prednisone yesterday, Emily did well on it this month, only getting a little out of sorts on the last day of the monthly course.

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.

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.

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.

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.

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.

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.

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!