Thursday, July 31, 2008

Still waiting

We are still on hold for resuming Emily's treatment. We thought we were going to get into but then a big fiasco happened and it didn't happen. We are hoping a bed opens tomorrow so she can resume.

Wednesday, July 30, 2008


Emily kicked the stomach flu in about 2 hours, she spent the rest of the day running around in her wig, playing "Camp Rock". She also helped Tracy and Grannie do a little cleaning up of the house. I am still in bed with a 100 degree fever. I think that really speaks to how healthy Emily really is, besides the obvious. She has had multiple colds and flus in chemo, and every time it's a non issue. When we started Chemo we were so worried she would get sick, and we still are, but really amazed by her ability to bounce back, from pretty much anything.

Haley ended up getting it too. When I called my Mom to give her an update, she had the flu also. Out of everyone effected, only Emily is back to %100. Wow.

Now it's looking like we will resume tomorrow, we won't know for sure until tomorrow when we call the APU to see if they can fit her LP in and if they have any beds on 1 North.

Hospital canceled, Emily has the stomacn flu

About 10 minutes after I posted the last post, Emily got sick, and her hospitalization has been canceled for today. We are hoping she will be able to go in tomorrow. We will have to go on a waiting list tomorrow to see if there is room.

Today's plan

Today Emily is supposed to have her LP around 1:30 this afternoon. Same drill as the 3 previous treatments. She has an LP, then they start IV hydration, then she will get 24 hour IV drip of high dose methotrexate. Then comes the waiting game, how quick can she clear her system of Methotrexate. We plan to be in until next Monday, basing that on our 3 previous stays. This IS the last one, I know we are all happy about that. Let's all think good thoughts for Emily in her procedure, and I hope it's not too selfish to all hope for a private room, that would be a nice way to end this.

One thing that MAY derail today's treatment. Tracy has recently had the flu, and then last night I was up all night with the stomach flu. I'll save you the details, but I am very sick, and achey all over. This morning Emily is saying her tummy hurts, so we are watching that. It would be a setback if we have to delay this. I will post an update later today with what ends up happening.

Monday, July 28, 2008

We love the weekends

We had a very fantastic weekend ! Friday night we went to dinner at the Tracy's we had a great time. It was Spencer's birthday, and we all had a great celebration. Emily had a really good time, especially because the Tracy girls are very close to her age and they have a lot in common. The Tracy's also have a lot of pets, which Emily and Haley absolutely love.

On Saturday Emily, Tracy, and Haley went to a birthday party down the street. They had a good time.

On Sunday we went to Portola State Park. It's about an hour's drive from our house, just over on the west side of the Santa Cruz mountains. I think it's the closest state park we have to us, but I may be mistaken. Portola State park is full of giant coastal redwoods, green ferns and mosses, and a flowing creek. We were all surprised that the creek was flowing in late July in a dought, but it was. We saw fish, newts, and crayfish in the river. We went along with our friends the Scotts, who have two daughters miroring the ages of our kids.....and they all play together really really well. The day was full of good friends, good food, creek walking, and hiking. Today's picture is one Rebecca caught of the girls sitting inside a tree stump.

Tomorrow Emily goes in for labs, and we expect she will qualify for the hospital on Wednesday. I still find it amazing how Emily can be in the hospital one week, out in the middle of nature running around the next week, and then to be talking about her going back into the hospital. Chemotherapy is tough, but Emily so far is much tougher. I can tell parenting her as a teen ager will be a serious challenge :-)

To me this was the best 3 or 4 day period I have had since March 9th, and Portola State park was the main reason. We are thinking we may go camping there in two weekends rather than going somewhere on a plane.

Saturday, July 26, 2008

Busy Busy

No fever scare is going to hold Emily back from having fun. This has been a very busy extended weekend for the family. Thursday, dinner at the Hammonds, Friday birthday party/ dinner at the Tracy’s, Saturday birthday party down the 's, Sunday we have a picnic and drive to the beach planned with our friends the Scotts.

A couple nights ago Tracy and I got out Emily's Chemo schedule. Most of the time we are finding it easier to live day-to-day, week-to-week, but I wanted to check in about what the future was looking like. I was really encouraged; here are a couple things that popped out at me. 1. Next week is Emily's last scheduled hospitalization for the rest of Chemo. 2. Next week will be her last LP for over 6 weeks, and then very few remaining after that. 3. We just have re-induction, and re-consolidation to get through, then 84 weeks of real maintenance. 4. In about 12 weeks, Emily will start a year and a half of maintenance.

I hope I am not screwing myself by looking ahead, but to me knowing just 12 more weeks of vigorous treatment is something we can all get through, since we have already been through 20 weeks to get to this point.

On Friday I exchanged emails with Emily's school Principal, Mrs. Spencer. She is working on who Emily's teacher will be, and whatever home schooling and tutoring we need. I am SO impressed with Country Lane School and the Moreland district; they have gone way out of their way to accommodate Emily and our family. And that thanks goes to the entire extended staff at the school, you all really are amazing.

Friday, July 25, 2008

a little scare last night

Last night we went to dinner at the Hammonds. It was a fun time, we always have fun when we get together. When I got there I noticed Emily was acting "odd". Very withdrawn, sort of hiding away in corners, very unlike Emily. I didn't pay it too much attention though. Later Tracy came and told me she thought Emily felt "hot" and was going to take her temperature. We did and it was 99.9 degrees, the highest reading we have ever personally had since she was diagnosed and home from the inital hospital stay. The threshold is a temp of 100.3 sustained for an hour. So we were very close to the threshold. She also started developing mouth and throat sores while we were there, also a bad sign. When we got home we took her temp again and it was 99.3. She went to bed and this morning her temp was and still is normal.

We are going to stay around home this weekend. Emily has a birthday party to attend on Saturday and we are considering driving over to the beach on Sunday.

Wednesday, July 23, 2008

Looking ahead to phase 4

Emily has one more of these Methotrexate treatments, and it is scheduled for next Wednesday. We expect it will go very similar to the past 3 treatments. Emily is off her 6MP pill again this week, which means she will be feeling pretty good. After phase 3 she will get another CT scan to see what's going on inside.

After Phase 3, we move to phase 4 called "re-induction." This will start on August 20th. It will be very similar to phase one, many of the same drugs and care plans. She is going to have to go through those intramuscular shots in her thigh, that were painful and also took away a good deal of her mobility. She will also be back on Prednisone, so the mood swings and food cravings will be coming back. There is also a new drug that has some very serious cardiac side effects, so they are going to have to scan her heart for a baseline before phase 4 and then after to see what damage was done to the heart muscle. We know this phase is going to be really hard on all of us, at least we have been through some tough stuff already, to prepare for this.

Emily was cleared to go on an airplane if we want, in between phase 3 and 4, I am trying to come up with something really fun for us to go do. I'm really not sure what yet.

Last night Emily and I went to the SF Giants baseball game. We had a blast and the Giants won, pretty perfect. Emily had so much fun she wants to go to another game sometime.

Tuesday, July 22, 2008

Emily's level was .08 this morning, she's OUT

I got a text message from Emily a little while ago telling me she was being discharged. she needed to be examined by the doctor and have her port de-accessed. As soon as that happens, they can leave.

3 down, 1 more Methotrexate treatment to go, scheduled for next Wednesday.

Monday, July 21, 2008

Her level was .12 so another night :-(

Ending day 4, and we are still in-patient.

Emily is still in the hospital and it is likely she will be there over night tonight. They are going to take her labs at 7:30 in hopes she is lucky and could get home at a decent hour. Her last reading was a .30, so from our experience the last two visits, Tracy and I are not very hopeful and we are trying to set Emily's expectations. We don't want to be pessimists with her about it, but we also don't like setting her up each lab draw.

We are getting a lot of help this stay. Last night my Mom slept at the hospital for us, which was great. Emily has also been getting a nice stream of visitors.

Let's all think good thoughts for these next few labs draws. If Emily gets out tomorrow night I am planning to take her to a SF Giants game if she feels like it. They are in town and she's been asking to go. I'm skeptical if it's to watch the baseball game or to try the garlic fries, we will see.

Sunday, July 20, 2008

Day 3 of this treatment.

Emily is still in the hospital tonight. When they took her labs this morning she was at .54. She has a ways to go, but it will be interesting what her level is tonight at 11. That should be telling if tomorrow looks good, or not. My Mom offered to stay with her tonight, so Tracy and I are home with Haley.

Today Emily had a couple of visitors to help pass the time. She also made it up to the play room for some Jelly Bean art. She has also been getting really interested in her American Girl dolls, Kit and Molly. This evening, Kit, Emily, Molly and I went for a long stroll. I was carring Molly and pushing the IV pole and Emily had Kit. Emily wanted to teach them how to walk so she had had lessons for them on the roof top deck.

Saturday, July 19, 2008

Saturday at Packard

A little Emily story from yesterday.

Yesterday they showed Wall*E the movie here in the play room. Emily was really excited about the movie, but also really excited to bring popcorn to the movie. We had brought some microwave popcorn with us to the hospital. We had to leave her alone for a little while to deal with a room issue. When we came back in the movie had started and Emily was eating her popcorn, but so were all the other kids. Emily had passed out and shared all of her popcorn. Then during the film Emily caught Tracy's eye and motioned that she needed Tracy urgently. Tracy went over to see what Emily wanted or needed. When Tracy got over to her, Emily urgently whispered in Tracy's ear "popcorn alert, popcorn alert" Tracy looked down and Emily had popcorn in her bag, but noticed that Emily was watching over the other kids and had noticed a little boy was about to run out of popcorn and she wanted to make sure he didn't run out.

In the middle of her own treatment and hospitalization that she is so concerned about how others are feeling and if they are having fun is truly amazing and is a great example of what a wonderful person she is.

We are just kicking back and passing the hours the best we can here. They have increased the rate of her hydration this time in hopes she clears quicker. The initial read was 21 and we need to be lower than 0.10 to leave, we have a ways to go.

Friday, July 18, 2008

Getting throuh this

Emily was hydrated enough to start the methotrexate at 11pm last night. She doens't need to be awake to start the chemo, it just hangs in a bag on the IV pole, and drips for 24 hours. She will be complete tonight at 11 and they will take the first reading of her level, which will be very high.

Emily is feeling the effects of the chemo more this round, both physically and emotionally. She has thrown up on the prior two high dose methotrexate treatments, but much closer to the end of their infusion, this time she had already thrown up 3 times before dinner. They are on top of it, and giving her all the medication they can to help make it better. At least at 11 she will start saline hydration and will feel better by morning. She is also more "down" than we've seen her in a while.

Our really frustruating news is we lost the private room. grrrrrrr. Tracy and I were probably the most upset, because that means we lost our day bed and are back to having to sleep in a chair. We are in the exact same room as last stay. They made it sound like we were going to have the private room the whole time, but I think back at what a Dr. told me on the third day of this whole ordeal, "nothing is %100 in the hospital", and once again that phrase rings true. Since it's chemo, a chemo ceritified nurse needs to care for her, and they were short staffed for Emily to have a chemo nurse on a non-cancer floor, and a bed opened up on 1-North, so we're back "home".

Tonight my Mom came and sat with Emily while Tracy, Haley and I went to dinner at our friends the Smith's. I have been friends with Mike and Lyn since high school and it was great to get together. They live right near the hosptial so getting over there was easy and quick. Mike is a cancer survivor too, which has been very inspirational to us through Emily's illness. Seeing first hand that cancer can have a happy ending makes up for a lot we have seen and been through.

Thursday, July 17, 2008

Okay, now she is settled

Emily really lucked out after a lot of waiting. As I mentioned in my earlier post today, she had her procedure at 3:30. Then she needed to recover. Then we should have been admitted to a room on 1 North, but the bed that was supposed to have opened up, didn't. So Tracy and Emily had to wait around until 8:30 for a room. We ended up not even being on 1 North, the oncology floor, we are on the 3rd floor in a general surgery ward. That means that 1 North has to staff a Oncology nurse to that floor to take care of Emily. The BEST news....for all that waiting we got a PRIVATE room finally !!! And we have been told that they won't be moving her, she gets it for this entire admission. That is so they can put kids who are more sick on 1 North. Emily, Tracy and I are all really excited to have privacy after two shared room experiences. Tracy and I will have a bed to sleep in rather than a chair, I can't tell you how much better it will be. She is also next to the play room, which she loves. Tomorrow they are showing a private screening of Disney Pixar's Wall-e at 2, and I am probably going to go check it out, if I can. It's been a really long day.

Emily was admitted, well sort of.

Emily was called in today for her procedure and she had it around 3:30 this afternoon. Right now she is till waiting for her bed to free up to be admitted for overnight, that should happen sometime this evening. There is not much to report, she is doing well, and we are all happy we got in and can keep the treatment going.

Wednesday, July 16, 2008

We have been called off for today

We thought we were on, and then they called to tell us there were no beds. We will try again tomorrow. I will try to get and post more info to this post later. We should know more about tomorrow later today.

I am going to work.

Tuesday, July 15, 2008

Are we on? or on hold?

Emily qualified for admission to the hospital today, per the results of her blood test for ANC level, which was 800. She also had a quick exam to clear her for admission. Then we were told that we are number 7 on the wait list to be in tomorrow. Sadly, there are so many sick kids, they have to use a wait list for treatments. Emily has to prepare as if she will be going in which means she will only be allowed "clears" after midnight and then is NPO after 6am tomorrow morning. Then we have to call the charge nurse at 9am to see if we can squeeze in. We also don't know if this would delay us a day, two, or what if we don't get in tomorrow. We have calls in to clarify it all, but at this time that's all I know. When I know more tomorrow I will update with a new post.

Monday, July 14, 2008

This week's plan

We are back home and looking at a very busy week. Emily will be going in for labs tomorrow. We expect she will make her ANC counts which means she will be admitted Wednesday for another LP and round of high dose methotrexate. Same drill as the past two treatments, she will stay until she clears. Her first time look 81 hours and the second 116. Tracy and I will split up hospital time so I don't need to miss much work.

As I have mentioned in earlier posts, we don't like this round of chemo very much. It's name sounded so appealing "Intermediate Maintenance" and we had it in our heads that there wouldn't be much going on. It has turned out to be uneventful, but so much time in the hospital. When Phase 3 is all said and done, Emily is going to have spent over 3 weeks of time in the hospital this summer.

The picture up top was taken yesterday afternoon in Tahoe. Emily and Haley had a nice swim in the lake. Earlier in the day, Emily and I went on a 2 mile hike down the side of the Truckee river. You can see it was pretty smokey, still due to all the wildfires in our state. It's getting better but slowly.

Saturday, July 12, 2008

Peppers in Tahoe, again

We are enjoying a very nice weekend up at Lake Tahoe. We are staying in the same cabin in Tahoe City that we were two weekends ago. Tracy and I are taking advantage of Tracy not having to work every other weekend and trying to get out of town when Emily's treatment allows it. It is something I want to keep up, there is so much to do within 4 hours driving of our home, and Emily's condition has taught us to enjoy and not take for granted what we are blessed to have.

We couldn't ask for nicer weather than today. It was a nice 85 degrees and dry. We went to Sand Harbor beach, which is in Nevada, just past Incline Village, if you know the Lake. Before the beach we found a nice picnic table at Sand Harbor in the trees and shade, and had our lunch. Then we found some shade on the beach and setup our chairs. Emily, Haley, and I played in the water. Tahoe is really cold because it is very deep and filled with melted snow, but it is very refreshing on a nice warm day. Tonight after we put Haley to bed, Tracy, Emily and I are going to finish up a round of 'the Game of Life' that we started last night. I'm sure we will play some Uno too, we love that game. Tracy and I try to keep the TV off on family weekends like this.

Emily is feeling great, when she is in her swimsuit with her hat on, you can't tell she is sick, she looks like any other kid on the beach. It's hard to beleive last weekend at this time she was in the hospital, and most likely next weekend she will be there too.

Wednesday, July 9, 2008

Labs and exam

Emily went to the clinic today for a lab draw and an exam. Dr. Link says she looks great. Her mouth sores are much less severe this time than last. He said that often patients get their worst sores on the first round of high dose methotreate and fewer in later treatments. That seems to be Emily's profile. That is opposite of what I would have expected. Her ANC levels are too low again, I think she was a 137 today, which means she is neutropenic. She will be on hold again this week to manage that anc level closer to where they want. In phase 3 she has gone from really low, to really high anc levels and I can't see what is causing such fluctuation. I am going to try not to worry about it. They would like her anc levels be at least 500 and over 750 to qualify for another round of methotrexate. She is due to be back in the hospital for another LP and methotrexate next Wednesday and we will be taking labs next Tuesday to determine if her levels are high enough.
We are going to try to get away this weekend, back up to Tahoe City. Emily is really excited about going back up, and so are Tracy and I.

Monday, July 7, 2008

Emily cleared at hour 116

This was the marathon of chemo visits. Emily was in almost as long as when she was first diagnosed. My new mantra for the day was, "whatever it takes" and that seems like a good theme for Phase 3 of chemo. This morning at 6 am Emily's level was .15 so we weren't sure if she was going to have to stay in another night. The Dr. ordered the blood draw tonight at 7pm. They wanted to go as late as they could, but if she passed enough time for us to get home at a decent hour. They took her blood at about 6:50pm. Emily and I played some cards, went on a walk, played some video games, and surfed to fill the two hours it takes to get the results back. Right around 9pm we got the good news, her level was .08, and we could go home. Emily's port was de-accessed and we went home. Just like last stay she ran out of the hospital as fast as she could. On her way out all the nurses and aides wanted to say good bye to Emily.

We are all happy to be at home together again, we haven't been since last Wednesday morning. She has to do this all over again a week from Wednesday.

Sunday, July 6, 2008

We are still in the hospital

Emily's Methotrexate level has not fallen low enough to be sent home. This is extremely long for a methotrexate treatment, but we can't do anything about it. Her level rose from a .12, to a .13, to a .18 in consecutive blood draws, so in the wrong direction. There really isn't anything "bad" about not clearing as long as she doesn't get the side effects of mouth sores. So far she has two, but they aren't bad. One new one, and the one from last time has flared up again. She's on "magic mouthwash" to numb her mouth when she wants to. For the most part the sores are not obstructing her eating, so she's not reporting much pain. For the most part she is doing fine, watching TV, playing games, drawing, dancing, singing and coloring. Hopefully she will be back home Monday.

Saturday, July 5, 2008

Slogging along

Emily's Methotrexate level at llpm last night was 0.84 at 48 hour after she started her treatment. She needs to be lower than .10 to be released. We are hoping to be close if not there by tomorrow, but it is so hard to guess.

Tracy is sick now too, so it's down to just me who can be with Emily in the hospital from our family. This afternoon Tracy and I are both gone, but she has a steady stream of visitors lined up to see her. When I told her there might be times this afternoon when she is alone, she smiled and gave me a thumbs up and said, "I kinda like being alone." I know that means she's excited to watch TV and play video games all afternoon. She has 4 sets of visitors stopping by as well, so she will be very busy without us. It's nice to get a break, and Tracy just can't be there with her cough.

Emily is mainly bored. She is also excited that at the end of this treatment she will be half way through Phase 3. All signs are she is doing really well.

Thursday, July 3, 2008

Stories from 1 North

Our current hospitalization is going well. Emily started her Methotrexate last night and so far she is not having any side effects. I arrived this morning to trade places with Tracy at the hospital. Since Haley has the flu we can't bring her in the hospital, and Tracy and I have to try to stay healthy ourselves so we can be there with Emily. When I arrived I decided to introduce myself to our room mate and her family. I was glad I did because I got to hear a story that made my day. She was a 22 month old little girl who was diagnosed with a tumor in January. She was from East Palo Alto, a lower income area nearby the hospital. She was there for her final Chemo treatment ! Her tumor had gone away and with her type of cancer, she has to do 6 months of Chemo and radation with her type, and this was the final day. She's too young to know what's going on with cancer, but her Mom was so happy. Her type has a low relapse level so they are very hopeful this little girl will live a normal life.

Emily had a stream of friends visit today, which is great because it helps pass the time and she has so much fun. In between friend visits Emily and I went on a walk. While we were leaving the ward the parents of a child came up to Emily and said they recognized her from when she was there a week and a half ago. They have been in the hospital since the first week of June, their 16 year old daughter has Leukemia with complications. The Mom told Emily that seeing Emily so full of energy and with a smile on her face really gives her hope for her daughter. I spoke with the parents for a while and learned a little about their story. It felt good to tell them with confidence that "things will get better, I know it's really hard in the beginning, hang in there." I couldn't believe that I was saying that, and meaning it. 6 weeks ago I didn't want to get to know any of the other parents or kids, I didn't want to connect to the "cancer family" but it scares me much less these days.

Emily will end her Methotrexate sometime tonight, and will start to clear it from her system. Let's hope it is quick. I will have an update tomorrow on how it is looking.

Since many of you will be far too busy to read my blog tomorrow, please HAVE A HAPPY 4TH of JULY.

Wednesday, July 2, 2008

Wild Day

Today was crazy. I was going to work in the morning and then go to join Emily and Tracy at the hospital for Emily treatment and admission. Haley has the flu, she has had a 102 degree fever on and off for the past 48 hours. Then Tracy's car wouldn't start. I came home and helped get the Hilander in the shop, and also we decided to do the timing belt and the whole big maintenance job. Since we were down to one car, I worked from home for the rest of the morning. Tracy, Emily and I left for the hospital at 12:30 to check in at 1. We checked in and eventually were called into pre-op.

In pre-op they take her weight, height, temp, blood pressure, and then access her port. They also ask us all the medication, dosage and the last time we gave the medication, so they have a current history of Emily's care. Then you meet with the RN who will be in the procedure room for the LP (lumbar puncture). Then you meet with the Anesthesiologist and a resident who go over the sedation plan, and you sign consent. They asked Emily when the last time she ate solid food was? She said, "I had some popcorn while I watched the Giants game last night with my Daddy." The resident had watched to game too, in which the Giants won, and we all talked about the exciting 9th inning. Then the NP who is actually doing the procedure comes in. We've done this about 9 times so at this point I know everything that is going to happen. Then Emily is loaded onto her gurney and we all walk to the OR/Procedure room.

During all this Tracy had to leave to drive home to take Haley to the Dr.'s. We(I) was worried that she was getting even more sick and wanted to have her seen. It turns out that it's just the flu, and she has to wait it out. So Tracy was not present for this procedure. I know it was hard for Tracy not to be there, but at the same time this is becoming routine, even putting Emily under. Emily did pretty well without her there, she's so brave. We were glad Haley was checked out. I was proud of myself, I usually leave the room before Emily is put to sleep, I don't like to watch it. Since Tracy wasn't there I had to do it, and it wasn't that bad. They asked Emily what "flavor" she wanted the O2 to be and she choose bubble gum. They rub some scented solution on the inside of the O2 mask. Then the nurse asked Emily if she had any brothers or sisters, and Emily told the nurse about Haley. As this is going on they are slowly administering the Propofol. The nurse started to tell Emily a story called "Emily and Haley go to the Bubble gum forest" She got to "Once opon a time there was a beautiful girl named Emily and she had a beautiful sister named Haley and one day there Mommy and Daddy took them to the Bubble gum forest......" she was out. I have heard that in past times she has cried being put under, but this was very peaceful and slow, it wasn't that bad at all.

About a half hour later I was called into the post-op area. Emily was awake and recovering really well, she was aware. She was hungry. They offered her ice cream, and she said, "Yes please" with a big smile. She actually had two servings before being transported to her room for in-patient treatment.

We have to share a room again. But this time our room is better. We have a window, and our room mate is an infant still in a crib. I am not sure if it's a boy or a girl or what type of cancer he or she has. It's really sad to see any of these kids, but infants are even tougher I think. At least we can communicate to Emily and she to us. Emily has to hydrate to a certain level and then will be given 24 hours of high dose Methotrexate, and then will have to stay until she get lower than a level of .10 in her blood. Last time it took her 81 hours to clear, they track it by hour. 72 is the average so we are hoping she clears a little faster this time, which is possible, but Tracy and I are set to be there for however long it takes.

The picture up top is tonight in the playroom at the hospital. They were making Volcanoes !

I am home with Haley with the flu tonight and Tracy is up at the hospital with Emily. Tomorrow night we will switch.

**To Emily's friends. If you are around this holiday weekend and can swing by for a visit, Emily would love to see you. Please call Tracy first so we can coordinate the visits.

Tuesday, July 1, 2008

Emily's hospitalization is a go for tomorrow

Emily had her labs drawn this morning and her ANC levels were really high, so she will be admitted tomorrow for another dose of Methotrexate IV. Last time it took her around 5 days total to clear and we are expecting about the same this time. This means the Pepper family will be hospital bound this holiday weekend. Emily wasn't too excited about it, but we all are happy to move on with treatment. Her Dr. examined her this morning because Emily has a little cold, but it's nothing to worry about.