Sunday, June 29, 2008

Weekend was a success

Our trip to Lake Tahoe was a smashing success, we all had a great time. When we left of Friday we were really worried about what we were getting ourselves into. Haley is a real handful right now, no matter where we are, so going anywhere overnight with her is a challenge in itself. On top of that Emily had been in a really gloomy and down mood most of last week, she wasn't excited at all about going anywhere. There were over 1000 wildfires in California last week, and by Friday there was so much smoke everywhere, we drove in smoke from the Bay Area ALL the way to Lake Tahoe. It was really smokey when we arrived, you could not see across the lake. All signs were this was going to be an tough weekend.....But at the moment we arrived to he cabin everything started to look up for the entire weekend. All of a sudden Emily was excited, she had a new house to explore, she's been to this Cabin but it's been a while, all she could remember was there were two sets of bunk beds, but where they were she had no idea. Our friends cabin was comfy, clean and quiet, just like we like. We put Haley to bed, and Tracy, Emily, and I played a few hands of Uno before we all hit the sack. Emily was noticably upbeat.

By Saturday morning the skies had cleared quite a bit. We took a nice walk around Tahoe City and Commons park by the lake. Later on we packed up our beach gear and drove to a beach Tracy and I really like in a city called Tahoe Vista. It's right near the CA/NV stateline on the CA side. It was a perfect, yet hot, afternoon. The water in Lake Tahoe is really cold, so not a problem on a hot day. Being the translucent family we are, we slathered ourselves in sunscreen and the girls hit the water. Tracy and I took turns watching the girls and resting. It was just perfect. I grew up spending a good deal of time in the summer in Tahoe, and being there with my family is really special to me, and making it up with Emily while on Chemo made it even more special. After plenty of sun, we packed it up and drove back to Tahoe City where the cabin is. We are within walking distance of Rosie's Cafe a well known local spot. We were lucky to get a table outside facing the lake in the shade. Given that it was walking distance to the cabin, Tracy and I also enjoyed a few margartitas on the rocks. After a delicious dinner we walked back to the cabin. Haley fell asleep first, then I was next. Emily and Tracy stayed up a little later and played connect 4 and the Simpson's version of the board game Life. Emily took her Chemo and went to bed. Tracy wasn't far behind.

Today we woke up early, got dressed and took a walk and got some coffee and bagels. We found a nice place to sit outside overlooking the lake. By this morning the sky was pretty clear, and very blue. As we drank our coffee we watched Emily run around and play, while Haley repeatedly told us there were dogs in the park. We walked back to the cabin, packed up and did some cleaning. After that we ate lunch outside, the weather was perfect. Around 2 we got in the car and drove to Tracy's Mom's house in Auburn, which is on our way home from Tahoe. Tracy's Mom and her 3 sisters each have 5 acre parcels next to each other, so Emily went to visit her Great Aunt Ann and had a swim in her pool. It was around 90 degrees and Emily came back to her Grandparent's house reporting having a great time. I took a nap while they all went swimming. We had a great steak dinner together, and drove home after. It was a nice visit.

Now it's back to reality, Chemo, hospitals, and treatment. Tracy and I are so happy we got away, we hadn't been more than 40 miles from our home since March 9th. We both continue to be amazed at Emily's abilty to physically deal with Chemo and her ability to lift her and everyone's spirit. She will have her labs drawn Tuesday to determine if she goes in the hospital Wednesday.

Friday, June 27, 2008

Big weekend ahead

I have a good friend who has a house in Tahoe City, I called him last night and the house was available so we took it for the weekend, our first trip since Emily was diagnosed !! We are all excited about going. We plan to play at the Lake all day tomorrow, and then go out for a nice dinner if Haley allows us :-) Emily told me she wants to go fishing so I think Sunday morning she and I will go do that. We will stop in Auburn on the way home to visit family on Sunday too. I should be able to post some pictures Saturday night or for sure by Sunday.

Besides her mouth/lip sores Emily is feeling pretty good. Her lips are starting to scab up which I think is a sign they are healing but they still are causing her a lot of pain and irritation. Distraction seems to work pretty well, and we have "Magic Mouthwash" to help numb her if she wants. She's not that wild about the numbing sensation either. Magic Mouthwash is a mixture of Lidocaine, Zantac and Benedryl. Mainly she is just waiting it out and dealing with the irritation and pain, typical of how she has dealt with a lot of Chemo and the side effects.

Have a great weekend.

Wednesday, June 25, 2008


Emily had her labs today and her ANC level was so high that she is going to increase her dose of 6MP, the pill she takes everyday. And even better, since her ANC was over 1100, Tracy is going to take her to a movie tonight. Normally with her anc levels so low we can't allow her around indoor crowds, like movie theaters. So tonight Emily is going to see Kung Fu Panda. I think she will like it from what I've heard from friends.

Emily has a new mouth sore, and her existing ones are causing a lot of pain. Last night she woke up in pain around mid night, and couldn't sleep again until 3am. She and Tracy sat up and watched TV. Today in her exam Dr. Link said these sores are typical from the methotrexate treatments. If she can't drink she will have to go back in the hospital for pain managment and hydration. We don't think it will get that serious, just really painful for poor little Em. We are still on track to be back in the hospital next Wednesday for round 2 of Methotrexate.

Monday, June 23, 2008

Marching forward

After I posted that we were home on Sunday we spent a relaxing day around the house. We were all really tired, well except for maybe Haley who doesn't let anyone take a rest. Emily developed a few mouth sores, as a side effect of the methotrexate. She also has pain when she swallows. Both areas of pain are "mild" and are not requiring any pain medication. She is able to eat. We called the Dr. when we noticed them worried we were going to have to pack back up and go back to the hospital. As long as she can eat without pain we should be ok, some kids have to be hospitalized with this condition for pain mangement to eat. I have to admit I am worried about the next time and if she will get them worse. I can't believe what she has to go through.

This week she will be going in for labs on Wednesday and I think that is it. Good to have a light week after the hospital, so we can all get the energy up to do it again on July 2nd.

Sunday, June 22, 2008

Emily is home!

Emily had her blood drawn at 6am this morning, her methotrexate level was .09 ! We got to got home !!! After we got the lab results we had to wait for the attending physician to come in and bless the discharge. We got home around 10am. Emily has a slight sore throat that we need to keep our eyes on. Hopefully it is nothing and just due to the dry air in the hospital room. Her blood counts didn't indicate any infection, which is what we are watching for. 1 methotrexate treatment down, 3 to go.

When Emily was release she literally ran out of the place, I could hardly keep up. She was screaming "I get to go home!"

Saturday, June 21, 2008

We didn't make it out tonight.

Emily had her labs drawn at 6:30 and her Methotrexate level was .11, so we didn't make it out of here tonight. She was as close as you can get, but they don't bend the rules. So it's another night in the hospital for us.

Are we getting out tonight?

First a quick correction to something I wrote yesterday. Emily's level of Methotrexate doesn't need to be at 1 to be released, it needs to be at .10 or lower to go home. To remind you her baseline was 112 when they first checked after giving her the Methotrexate. At 3:30 yesterday afternoon it had dropped all the way down to .97. Then last night at 9:30 they took her labs again and she was at .56. We asked and they are going to check again tonight at 7pm instead of 9:30 and we hope to be below .10, and if we are we can leave, if not, it's another night in the hospital. To go from 112 all the way down to .97 was a really good start we were told, most kids drop to a level between 1 and 10 on the hour 40 blood draw of the treatment and Emily was below the low average, that's why the Dr. will try a little early today, everyone wants us to be able to go home. I can't believe we have to do this all over again a week from Wednesday.

Yesterday evening we had Haley at our friends the Scott's, and my Mom came down to the hospital and sat with Emily. Tracy and I went out to dinner without a child, which was nice to do! We had sushi which we really enjoy but don't get to eat often. We hardly ever eat out anymore, and with two kids, sushi just doesn't happen too often. It was delicious. During dinner I told Tracy that while I was optimistic and happy about the way Emily's treatment has been going, I still couldn't believe this was all happening to us. She told me that she had that same thought earlier in the day. I think being back in the hospital really makes it hit home again. We know we are fortunate so far, I mean we really know, we see cancer patients at least 3 times a week, but we still can't believe this is happening to Emily. We also talked about how it's going better than a lot of people would imagine or think including us. I remember when we were first diagnosed how absolutely devastated I was. I must have looked so sad when I was pushing her in her wheel chair or even when I was walking around. These days I usually have a big smile on my face as I am pushing Emily's IV pole as we go on walks. I can see the fear and sadness in people's eyes as they attempt not to have eye contact with me in the halls. I am sorry they have pity for me, I have a wonderful daughter who I just love spending time with and especially talking to. I have a much different perspective of what Cancer is now, and what it isn't. I also can't believe how strong Emily is and how much she is determined to beat this, she's stronger than even she knows.

I will post a second update tonight with results from her lab draw at 7pm which will determine if we get to go home tonight. It will take 2 hours to get the results so around 9ish I should know.

Friday, June 20, 2008

Updates from Packard

Emily ended her infusion of Methotrexate around 9:30pm last night. Right after they drew labs from her port. By the way she slept through all of this. Then she was given hydration in her port with a pump to really get a lot of fluid in her. It's a saline, with bicarb and dextrose to be specific. Later in the night her labs came back and looked good. In this therapy they are checking levels of Methotrexate in her blood, and her Creatinine level for her kidney function. Her Methotrexate level was 112, which I was told is a pretty good baseline. She will need to drop to below 1, so she has a way to go. To put some context to that level, if she had a level over 150, they would have given her even more hydration because it's higher than they like. But she started with 112 and our nurse last night, Kacie, said that she would bet that Emily will be released after her labs Saturday night, so hopefully Emily and I will be heading home around 11pm Saturday, but we will see. Her Creatinine level going in was .3 and after all the Methotrexate was .3, so this treatment had little mal effect on her kidneys, which is also very good. Her stomach is a little upset, and she has zero appetite, all she has eaten in the last 30 hours is a very small amount of popcorn and a bite or two here and there of a few snacks. This is to be expected getting high dose chemo. The other big side effect they are looking for are mouth sores, or really sores anywhere in the GI tract, but they typically present in the mouth first. I was told they are a sign of infection, so I hope we don't see that complication, that would probably mean a longer stay. So far she doesn't have any. This afternoon she is going to get a vitamin called Leukovorin which will also help clear the Methotrexate.

I stayed with her last night, and I concur with Tracy, the chair stinks for sleeping. Next time odds are we will have a private room with a bed for the parent, but this time, man I can't stop complaining can I? I didn't sleep at all really. Around 3am I got the bright idea to go on a stroll outside. When I got back I found out they lock the ward at night, so I had to go find security and they had to call the nurse desk and I had to be let back in. A big ordeal for a short walk. Emily and I shared her bed from about 4am - 6am and I dozed. The only nice part was just being close to Emily. She woke up and said, "Daddy, I'm glad we're buddies." That made the sleepless night worth it. She also told me she was bored, so I hope we can get her out of there quick.

Thursday, June 19, 2008

More for today

Emily is doing well. She will be done with the Methotrexate later tonight. She has nausea but it is being managed with Zofran and Ativan. Dr. Link examined her today very quickly, and said she is looking great. She had her friend Anna stop by this morning for a good visit. This afternoon Emily's Grannie Carol and Grandma Gail are visiting, she will be in heaven. Em also made an appearance at the play room this afternoon. I am home with Haley watching her this afternoon, and will go back for the evening around 6:30. Emily's little room mate goes to bed at 6 so we will need to be quiet. Emily and I like to play Uno so I hope we get a few hands in before bed.

Update from the hospital

Emily started her 24 hour infusion of Methotrexate last night around 10pm. It takes 24 hours to fr it to all go in. So 10pm was "Hour Zero" of the treatment. At "hour 24" they will stop the Methotrexte. Then every 24 hours they will test her blood to see what the level of Methotrexate is, at a certain thresh hold we will be discharged, usually at "Hour 72" patients are discharged. So if Emily has a typical experience, we will be discharged on Sunday I believe. So far it is OK, Emily woke up with some nausea and it taking some medication for it.   Right now she is playing Mario Kart on her DS and not complaining a bit.

We found out more about where we are. It is a temporary in-patient unit, which will become the Oncology Day hospital, when the new inpatient ward is complete. The new ward is going to be really nice. Where we are will be a great day hospital, but it's not the best inpatient experience, especially where we are. There are only 3 rooms that are shared, and we are in one of them, with no window and no day bed for the parents. The new ward will have all private rooms with beds for the parents, with a lot of other really nice amenities.  We were lucky to get a bed at all, and are making the best of it.

Wednesday, June 18, 2008

Long, Long Day, but everything is good.

We had a long day today. We had to show up at the hospital at 8:30am, to check in for Emily's procedure. Her LP procedure went really smooth, Emily was put under, had her lumbar puncture and recovered really fast. Then we were supposed to go to a hospital room, but the place is so crowded that there wasn't going to be a bed ready until 5pm. We were looking at having to sit in the recovery room for 6 hours. Luckily they changed Emily's order and allowed us to walk around with her in a wheel chair, hooked up to her IV. Around 4:45 our room was ready. We did not get a private room :-( and we realize how lucky we were the first time. Emily is sharing with a very little boy, who doesn't speak English. I could hear his nurse giving him Vincristine, so that probably means he is a new patient. Given that we are sharing our space is much smaller than last time, and Tracy and I are going to have to take turns sleeping in a easy chair. Last time we had a day bed for the parents. To be honest, I don't care, I feel SO LUCKY that Emily is a patient here.

Everyone remembers her from when she was first admitted and so happy to see how well she is doing. Tonight Tracy is going to stay here with Emily and I am going to go home, we plan to switch every night.

I will have more updates tomorrow.

Tuesday, June 17, 2008

Emily will be back in the hospital tomorrow

Emily had her labs drawn this morning and her ANC level was up in the 800's which is good enough to be resume treatment. Tomorrow she will go in and be put under, have a procedure, and then be admitted for 24 hours of high dose Methotrexate via IV. She can go home when she clears it from her system, 3 -5 days as I have mentioned before.

I am glad treatment is resuming. Being on hold was tough. I have work meetings and deliverables that I had to cancel last week and put on hold for this week until I knew what the plan was for Emily. Selfishly I don't like all the waiting, but I know it's necessary. Tracy and I are now rolling out the plan for hospital coverage, who's going to sleep there which night, who is going to take care of Haley so we can be there for Emily, etc. There is a lot to do.

When we are in the hospital Emily and I have been planning to make a video so she can show you some of the places she goes when she is in treatment. She is also looking forward to making friends with other kids. If you are local, we'd love a visit too, I will post where we are once we have been admitted. Having a nice steady steam of visitors was so nice last time she was in. I will have my computer with me, so I will update everyone on how she is doing and feeling. The last time we were in-patient the whole experiecne was so nice, I hope it goes as well this time. Our circumstances for being there are so different. It will bring back a lot of memories though, especially when we see parents going through diagnosis like we were three months ago. I think the best thing I can do is just put on a good face so those parents can see that it's possbile for things to go well when your child is in treatment.

Sunday, June 15, 2008

Father's Day, Tracy's Birthday, Lipizzaner Stallions, and Pox update

First a quick update on the Chicken Pox exposure. They retested the child and he was negative so Emily was not exposed to Chicken Pox. That was nice news to hear. I hope whatever the child has he is OK, it's horrible to think of sick children on Chemo and I am thankful that Emily doesn't need to worry.

Emily got to go on a special outing last night. There is an organization called the Nicholas Colby Foundation, and they donated tickets to the Lipizzener Stallions at the Oracle Arena in Oakland. The Nicholas Colby Fund is set up in memory of Nicholas, a boy who died of an infection during his treatment for Leukemia. It really helps Nicholas's parents to give to kids. They have a Luxury Box at the Oracle Arena, and the Golden State Warriors have a fund raiser for the Fund every year , Nicholas was a big fan. The fund also has a box at the SF Opera House and the SF Symphony Hall. There was a photographer at the even t and you can see a picture of Emily here. Emily met a girl named Megan, whos brother died last year of Leukemia, her parents are also starting a foundation. Emily ask ed Megan "Do you want to be friends?" and she said yes, so they exchanged email addresses. (what a world we live in where six and seven year old 's have email addresses. ) The horses are trained to dance, so that is what the show was about. Emily had such a good time she cried when it was time to come home.

Today is Father's Day and it is Tracy's Birthday. It is also my Brother's Birthday, but he didn't come home this weekend from L.A. so we won't be seeing him. We are going to go over to my Mom's this afternoon for a BBQ and to celebrate the birthday and Father 's Day.

It is almost certain that Emily will be in the hospital this week. We misunderstood that there was a chance she would go in on Friday there really was not a chance. It is standard in the protocol that if she is low on her ANC counts that they hold medication and wait one week to resume. Emily will have her labs drawn on Tuesday and then if she is within the acceptable limits of ANC, she will be admitted on Wednesday. With a week off of her medication it would be really surprising if an admission doesn't happen.

Friday, June 13, 2008

Still on hold and Pox exposure.

Today Emily went in for labs. Her ANC is still below 500 which means she can't fight disease and infection well. She needs to get above 500 to be admitted and to restart phase 3. They will test her again on Tuesday and then like she will be admitted on Wednesday. We will see.

We got a call late today from the clinic, Emily may have been exposed to Chicken Pox when she was at the clinic. A boy who didn't know he had it was in the waiting room. They are testing him, and if he is positive Emily will have to get an infusion of Gamma Globulin, which boots your immune system temporarily just in case she was exposed. We got a call around 8:45 tonight and the first test of the kid was inconclusive, so they are going to re-test him tomorrow and let us know.

Wednesday, June 11, 2008

Sophia donates to Locks of Love!

A few weeks ago I posted pictures of our friend Allie Tracy who had just donated her hair to Locks of Love. Earlier this week our friend Sophia Smith made a donation to the program and I want to thank her and congratulate her on making a donation. Amazing stuff Sophia.

We are still on hold for the hospital, as planned. We will check again on Friday and the doctors will make their decisions. When I got home yesterday I asked Emily how she felt about not having to be admitted? I thought she was going to be happy, but she said she was sad. I asked her why? She is convinced that she's going to meet new friends while she's in the hospital and she was sad because she was looking forward to meeting her room mate. In a way I am glad she has something to look forward to, once again she's making the best of her situation.

Tuesday, June 10, 2008

Hospital stay now on hold

Emily went in for her labs today. We were all thinking it was just a formality and that her levels would be ok to admit her. They were not, specifically her ANC level was 386 and it needs to be 500 to get the high dose Methotrexate. So she will be re-tested on Friday. Depending on hospital beds she could be admitted Friday, or sometime early next week. So, here goes the roller coaster of treatment.

It's frustrating because Tracy and I and our families had all the care plans nailed down, now we have to re-start. Don't get me wrong I want them to do what they need to do for Emily, I just selfishly want it to go as planned.

So for now she is on hold, no pills or anything, to get her ANC level back to 500 so we can start it all again.

Monday, June 9, 2008

Gearing up for the hospital

Emily is still on track to be back in the hospital this coming Wednesday. She will have her labs drawn tomorrow to confirm her hospitalization. We talked with the in-patient NP today to ask what to expect since this is our first of 4 high dose Methotrexate hospitalizations. She will be put under for her LP injection of Methtrexate. After she wakes up and recovers she will be admitted as an in-patient and transferred to a hospital room. Then she will receive high dose Methotrexate via IV for 24 hours. The she hydrates and needs to clear her system. They give her medication to speed that along. Some kids clear in 3 days, one boy who is on therapy now always takes 5 days, so until our first round is over, we don't really know what to expect for length of stay. Tracy and I will take turns spending the night with her at the hospital. I am really hoping for a private room.

We have been told the main side effect of Methotrexate is nausea, which they will treat with Zofran. While she is in the hospital she won't need to be monitored, so she can have free rein of the place, but she will have an IV pole to deal with. She's going to be bored but we'll keep her busy with all her new toys and things she received last time she was in the hospital.

I will have an update tomorrow when we get lab results to confirm that this is all happening this week. I would be surprised though if it were canceled, Emily is doing really well.

We had a very nice, and relaxing weekend.

Friday, June 6, 2008

clot is gone.

Today we got some unexpected good news. Emily's hematologist read the CT scan from Monday and the blood clot is GONE !!! Emily can discontinue her daily Lovenox shot tonight. We don't know if she will take it again in the future when she goes back on L-asparaginase in phase 4 as a preventative; we'll cross that bridge when we get there. It will be nice to see the bruising on her stomach from the daily shots go away.

Her blood levels from the labs taken this morning were mixed. Some levels were up and some were down as a result of two days of 6MP pill therapy. She is still on track to be back in the hospital next Wednesday.

Last night we gave Emily an unexpected treat. She isn't supposed to go to movie theaters, but since her ANC was so high earlier in the week, we decided to let her go. Tracy and Emily saw Narnia: Prince Caspian. She really liked it. Tis will probably be the last moive for 6 months so we're glad she got it in.

No big plans for the weekend.

Wednesday, June 4, 2008

Good news on Emily's CT scan

We got the results from Emily's CT scan on Monday. She is still looking good. She still has the mass in her chest cavity, but it is smaller. With Lymphoma it wouldn't be smaller if it had become malignant again. It is small and may be there for a long time, or forever. None of us care as long as it stays cancer free. She has other residual nodules that we didn't know about after the first scan, but nothing out of the ordinary. A nodule needs to be over a centimeter to be a concern and her largest one was 3mm. We all have them, Emily may have more left over from the massive growth that was in her chest cavity when this was diagnosed.

Besides the CT results the exam was fast and went fine. Mainly we talked about Phase 3 that we are going to start today with her 6MP pill. It's a smaller dose than the last phase. Then we went over next Wednesday and the hospitalization. Our NP made the reservation for 5 days as is standard for this visit, but we could be out in less time. As soon as her blood is to a certain level of Methotrexate, she can be discharged. It takes some kids 5 days. They even commented that since Emily seems to be blowing through this for now, that she may not have to be there that long. Since she needs Methotrexate both IV and IT she will almost certainly be admitted at Packard hospital at Stanford. There was an off chance of El Camino hospital for this procedure. We are going to have to do this up to 5 day hospital stay every other week for 9 weeks. I hadn't really done the math, but today realized that Emily will spend a good deal of her summer in the hospital. Last time we were in we had a private room, we probably won't at Stanford this next time, but I think Emily will have fun with a room mate if that happens. I hope that person is a good listener :-) (Emily loves to talk.)

Today was "Pajama Day" in Emily's first grade class, we were able to get back home so she could go to the last hour of school.

Labs Friday, update then.

Tuesday, June 3, 2008

Cleared for Phase 3

We got a call this evening from the hospital. It turns out Emily rebounded her blood levels so fast that we are going to start Phase 3 tomorrow. Her NP noted she was "surprised" that Emily was ready to start Phase 3 this week. She will be going into the hospital on June 11th for the 3 to 4 day stay I've been talking about, it's now scheduled. June 11th is her last day of school, but luckily the end of year party is this Friday. Her ANC level is 1500 so she can definitely attend. Since she is going in Wednesday she should be back home on June 15th, fathers day and Tracy's Birthday. We are hoping that happens.

Phase 3 starts tomorrow with her starting to take her "6MP" pill daily, that's it. We will still be going into the clinic 3 times a week, for labs and exams, but the medication is less during the 9 week period, except for the 4 hospital stays. For the hospital stays, she will be put under, and given high dose methotrexate, intrathecally (in her spine) and intravenously. She has had these many times already but not high dose. Methotrexte is used in Chemotherapy and in patients with Rheumatoid Arthritis. It stops cellular growth. After these hi doses she will be admitted to the hospital for 3 to 4 days, being hydrated via her IV port.

CT results tomorrow.

Monday, June 2, 2008

CT today

So today Em got her CT and she was so nervous about getting the IV for the contrast. She was so upset and anxious right before it happened but calmed down immediately afterwards. She even admitted that the actual stick of the needle wasn't too bad. After the CT it was like any other hospital visit. You know, she educated the staff about the whole Hannah Montana vs. Miley Cyrus/Stewart "secret star" phenomenon and also showed off her new video "on my blog." I think she won some more fans and at least one more blog subscriber.

Tomorrow is a routine blood draw from her port ("I didn't feel the needle going in...or out!") and then Wednesday an appointment with her doctor. Pray for continued good news for us!

Sunday, June 1, 2008

Interview with Emily.

Here is a video interview with Emily, and then a clip of Emily and Haley dancing. Enjoy, but I'm not a video editor so it just ends abruptly. Just click the video below to start it. Besides the video, there is no new news. Emily continues to do well. She is getting a cold so we are watching that.

(I have had some feedback that at the end of Emily's video there are other video links to some videos in poor taste. Please use caution if you are watching this with children, and I'd advise just watching the video of Emily and not exploring the suggested ones afterwards; they are not related to my project.)