Sunday, August 31, 2008

Labor Day Weekend

Emily is hanging in there the best she can through her current treatment. Her appetite has increased and she is having food cravings that you expect to see with steroids. The past two nights I've been woken at 3am by Emily wanting a meal. I've given her a bowl of cereal each night and that seems to do the job. Mainly she is sad, as Tracy posted on Friday. She seems happier in the mornings when she first wakes up and gets worse as the day goes on.

Today I took Emily up to my Mom's for a surprise visit. She really likes to go to Grandma's house. We had lunch, and then my Mom read her a few chapters of Little House in the Big Woods, and then we decided that Emily wanted to stay and spend the night. She was happier with Grandma than I've seen her for a while. Luckily I had her medication with me, so I left it with my Mom and we will see Emily tomorrow morning.

Friday, August 29, 2008

shot #4

Emily didn't feel up to going to school today so she just took it easy at home until her shot appointment. Chris ended up taking her and I stayed home with Haley, the Birthday Girl. Apparently Emily did the most amazing job ever with the shot. No crying beforehand; not even fazed at all. She cried afterward because it hurt, but usually beforehand she gets very anxious and upset at the thought (understandably!). I think she did so well because her Number One Buddy, Chris, was the only one there. Usually she gets Mommy, who is only Number Three. (Haley is Number Two.) Emily and Chris have an amazing relationship, needless to say. :-)

Chris and I have noticed the last couple of days that Emily seems to be getting depressed. We think it is a side effect of the Dexamethasone, which can cause mood changes. It is really hard to watch her and listen to her express these sad thoughts. Her cancer seems to be constantly on her mind and she keeps saying how much she hates it. We need to take her somewhere fun this weekend to give her some joy. She did get excited today for Haley's birthday, so that was really sweet to see. I am comforted knowing that this is temporary and she will perk up once she gets off this medicine, but there are still 4 more weeks before she is completely tapered off it.

Thursday, August 28, 2008

A little scare, parent produced

I didn't plan to post today but we had a scare.

This morning after we all woke up, Tracy and I decided to check Emily for signs of a blood clot. We had no real reason to check, but we are very nervous about the clotting risk from her medication. One of the ways to assess a blood clot in the chest is to measure the diameter of each arm. If you are careful to do it in the same place on each arm, you would expect the measurements to be close to each other. But we observed that one of her arms was larger in diameter. Given that she had a blood clot in April, we wanted to have her seen. The doctors told us it was highly unlikely she had a clot, but offered to do an ultra sound to help ease our minds. The results came back negative, Emily does not have another blood clot.

Besides Tracy, Emily, and Haley having to give up a day to have these exams, I am glad we had the ultra sound. I have not been able to sleep very well since phase 4 started.

Emily will get another shot tomorrow.

Wednesday, August 27, 2008

Phase 4 shots are half way over

Emily had her 3rd Asperiginase shot today. It was hard for her again, but she is getting better at letting it happen, knowing that we are getting to the end of these. On Friday she will get another one.

Emily is doing much better in re-induction that she did in induction. The Dr.'s told us this would be the case, but it was hard for Tracy and I to believe. Even with all the hard stuff I've posted the past few days, Emily is managing to get to school every day since it started back up, and this afternoon after her shot she went swimming with her friend Olivia.

Friday is Haley's second birthday. We are going have a very small party on Monday to celebrate it. I bet the most excited person about her birthday is Emily, she is the sweetest most caring older sister. We give Emily a small allowance to help her learn about saving and spending. Guess what her first purchase was? She spent her money so that Haley could ride the little merry go round at our local mall, and to this day hasn't spent a cent on herself.

I am not going to post tomorrow, but will be back with an update Friday.

Tuesday, August 26, 2008

Simply Inspirational

Emily had an amazing day, just seeing her dig deep and remain so positive, has given me a new burst of enery myself, hopefully to jam through the next few weeks.

This morning Emily woke up and as I was asking how she was feeling, she gaged and almost threw up. So I knew she was feeling sick from the moment of waking. Tracy was on top of it as usual and gave her a dose of Zofran. Soon after Emily was hungry and ate 2 eggs, 2 glasses of juice, and a bowl of cereal. She then announced that she was going to school, but as I was getting ready to drive her over, she got sick again. I ended up working at home in the morning so Tracy could do her errands and Emily was able to rest. At around 11:30 she was feeling well enough to go to school, and she walked over, and spent the remainder of the day at school. When I got home she was out in the backyard running around with her sister. I asked her how she was feeling and she ran up to me to give me a big hug and told me she was feeling "fantastic". How she was able to pull it together and have a great day, with all that Chemo on board is truly inspirational. It really puts "problems" into perscpective.

Today marks 9 weeks remaining until Maintenance. Single digits !!!!

Monday, August 25, 2008


Today Emily had more chemo, a chemo-fest actually. She had her Asperinginase shot along with IV Vinchristine and Doxorubacin. The shot was tough again, she really fought against it for a while but finally settled down enough for us to hold her down while they gave the shot. After the shot she got her IV medication. The whole appointment took 4 hours, so we were there a while.

After treatment we ordered take out from Max's at Stanford shopping center, and rushed home. Even after chemo, Emily put away a full bowl of Max's Mac n Cheese, one of her favorites.

Chemo is starting to take a little out of Emily, and it's hard to watch that happen. More often than in the past she just lays or sits expressionless, and when you ask her how she is she quietly replies "fine". I can tell she is sad. Steroids can also make you depressed so that may be going on too. I can't wait for the next 9 weeks to be over.

Saturday, August 23, 2008

Emily has her nails done.

Today was a little better than yesterday. The picture above is of Emily at a nail spa in Santana Row in San Jose. There were only a few smiles today and this was one of them. She's always wanted to go to have her nails done, so we went for it in hopes to cheer her up and it worked. Most of the day was spent on the couch or in bed, not feeling well, but still much improved over yesterday and the day before. She is constantly telling me how much she wants her "normal" life back. It's easier to keep her going this phase because we have done this before and know she will recover in a few weeks We think she is starting to puff up a little, which is expected.

On Monday she has another shot at 2 in the afternoon and I'm sure she is dreading it. There were a couple people who asked if we could give her a sedative before the shot. That is not an option, they don't like giving her anything she really doesn't need and could possibly limit their options if she were to have a complication or reaction to the shot. Monday's shot will be number 2 of 6 remaining in the phase.

Emily's aquarium is doing well. There aren't going to be any babies this time, but Emily now has 11 fish, and all are doing fine. We have also added some natural plants, and have plans to add some snails this week. Both Emily and Haley enjoy feeding and watching the fish and aquarium.

If she is up for it we are going to drive over the the beach tomorrow and have dinner at Duarte's in Pescadero. Emily has a new love for steamed clams.

Friday, August 22, 2008

Rough day, poor Emily

Emily is having a hard time in general. Starting Phase 4 and school within 72 hours of each other was tough enough, but she also knew that today's shot was coming, something she has been dreading literally for months. This morning she refused to go to school when she woke up. She wasn't sick, she was just down and didn't feel like going. Tracy and I both want her to go when she is physically able, so after some talking we got Emily to go to school. She only had to stay until 11:30, because today was shot day and her clinic appointment was at 12:30.

We arrived to the clinic on time, and they were ready for us. Emily had her vitals taken. Her blood pressure has increased due to the Dexamethasone but they didn't seem to be alarmed at all by it. We were then given a bed, and within 10 minutes Emily was getting the shot. Emily was squeezing a squeeze toy while blowing bubbles that a play therapist was holding, I was holding down her arms so she couldn't try to push the poor nurse, who was giving Emily the shot. Emily screamed so loud during the shot. I need to post a picture of this needle, its huge, even on adult standards it's huge, and they have to get it way down deep in her thigh muscle and then inject a very painful drug that stings her as it infuses into her muscle. She cried in pain for a good three minutes with all of us telling her how brave she was and that it was over. After the shot she turned off the TV and lay on her side away from us, and didn't want to talk. She acted very sad. I asked her what was up and she said she was really mad, mad that she has cancer and has to do all of this treatment. Emily is always so positive and up, I really didn't know how to deal with this new attitude. But then I remembered that I told her that I would be there to help her on her hardest days, and that we need to put on a good face for her, to help her through these next few weeks.

She is doing better now that we are home.

We don't have any big plans this weekend. Emily is due at the clinic next Monday, Wednesday and Friday for more treatments.

Thursday, August 21, 2008

First day of School

Emily started second grade today. She woke up feeling very nervous about going to school, however by the time it was time to leave the house she seemed pretty excited. We met her teacher yesterday so Emily at least didn't have to worry about that part.

She is starting to feel the effects of this round of chemo. She was very tired yesterday, falling asleep at times she normally wouldn't. She also is starting to complain of stomach aches, which we expect from the Dexamethasone.

Tomorrow we have to go in for a clinic visit and she is going to get one of the 6 shots she has to get in this phase. It's one of those IM shots to her thigh that caused so much pain and anxiety in phase 1. She has so much to deal with, but we can keep her going by reminding her that maintenance is getting closer and closer every day.

Tuesday, August 19, 2008

Phase 4 has started

Today Emily started the 4th phase of Chemo. She had to go in at 8:45 for labs. They wanted to get a baseline on her blood levels before they started the phase. Emily also had a physical exam by her NP and Dr. Link. They both said she looks great.

Dr. Link also wanted to do a chest X-ray to see how things were looking inside. To remind you Emily still has a mass in her media stinal cavity. The results of the chest x-ray show that it is even smaller than the last X-ray. When she had her PET scan in April it was not cancerous, and given the nature of Lyphoma tumors, it is safe to assume it is still not cancerous. If it were it would be growing like crazy, not staying the same basic shape but getting smaller and smaller. She will have a PET scan in about 10 weeks at the end of Reconsolidation.

It is still not %100 certain if she will go on Lovenox. The original plan was for her to go on a preventative dose, but Dr. Link doesn't think she needs to be on it. There is a lot that has changed since the first phase, and he thinks she is at a lower risk for a recurring blood clot. Some of the things that are different are she is much healthier, she has no tumors and nodules in her chest, and she doesn't have a PICC line as she did in Phase 1. To him this contraindicates Lovenox. I have a feeling we could have some say in this if we disagree, and we have a few days to think about it and can talk with him about his decision. I talked in detail with the NP about the decision and the reasons behind it this afternoon.

After the exam, Emily had to go to the day hosptial for IV Chemo. She got doxorubicin. She also has to start taking Dexamethasone three times a day.

Our next visit to the clinic is on Friday.

Sunday, August 17, 2008

Big Weekend

We managed to pack a lot into another weekend. On Saturday Emily, Tracy, my Mom, and Emily's friend Oliva, all went to the circus on Saturday. We were lucky to get 4 tickets from the Nicholas Colby foundation again. Everyone had a good time. Emily spent the night at Grandma's house, and then went to church with her on Sunday. Before Emily was diagnosed she used to go to church with my Mom maybe twice a month, but hadn't gone since she was diagnosed. There were a lot of my Mom's church friends who were really happy to see her again. This afternoon we drove over to Santa Cruz and enjoyed an afternoon at the Beach Boardwalk. It was fun, but really crowded. Emily and Haley went on some rides, and after we went out for dinner on the pier. We had a great window view looking out on the Pacific Ocean at sunset. Emily REALLY wanted to try clams, and she got them and loved them.

This will be a big week. We start Phase 4 on Tuesday, and school starts Thursday. I will post again Tuesday once phase 4 has started. I have enjoyed a taking it easy on the blog this week, so I can keep it up through phase 4 and 5. So here we go...........

Wednesday, August 13, 2008

Lunch together

Today Emily, Haley and Tracy met me at lunch time at Mitchell Park in Palo Alto. It was really nice to see the girls on a work day, and it couldn't have been a nicer day to be outside at the park. Emily and Haley also got to climb around on some play structures, and I even climbed on a gigantic tree stump that has been turned into a play structure.

After we ate, I went back to work, and the girls were off to the clinic so Em could have her labs drawn. Labs are the only thing we had to do all week, cancer related.

Last night the female Molly fish started acting "odd" so we think she is just about to have her babies. Emily and I got a breeding basket and put the female fish in it. That way our friend Leah can't eat the babies. I have told Emily that we don't know what to expect, and aren't sure if the babies will live. I really have no experience with this.

As I mentioned in an earlier post, Emily has lost a lot of weight. It really worries me when I look at her. I remind myself that she isn't acting odd and has her appetite back. I think she is going to be OK, but I don't like seeing her like this. She must be tired of my constantly asking "Em, how are you feeling? Are you worried about anything?" The answer is usually something like "I feel great, but I am worried Leah is going to eat more of my fish" then I relax and am happy her concerns are relatively trival and innocent and I then can relax a bit.

Tuesday, August 12, 2008

Tragedy in the tank

Even though I checked to make sure our fish were all compatible with each other, Leah the catfish, ate 5 of the 6 neon tetras. and the 6th one looks pretty nervous swimming around the tank. Emily is really sad about this. She's lost a majority of her new fish, just as she was getting to name them all. I feel really bad for her. She was upset but taking it pretty well. We will get some new replacement fish that are a little larger and who Leah can't eat. Emily wrote a note to Leah the fish about how mad she is and stuck it on the aquarium.

Emily is feel OK, but you can really see the effects of chemo adding up on her. She is very thin, has a little less energy, and isn't as up-beat. I am sure we will make it through this period, but as a parent it's hard to watch. I will probably take next Monday off and do something special with her.

Monday, August 11, 2008

Phase 3 done, now some rest before phase 4

Emily doesn't have any chemo or really any medication to take between today and the 19th, her longest break yet. She is really happy to be home. She didn't eat for 6 days while she was in the hospital so she's really thin, but her appetite is back so she will be fine in a couple days. She really likes her aquarium. She selected 9 fish to start with, 6 neon tetras, a catfish, and 2 Mollies. The female Molly is pregnant, so we are hoping to be able to capture and save the babies in a breeding net.

This week the plan is to take it easy and rest up. The next phase is a tough one on her body. As of now we have 11 weeks to go until maintenance. Emily's birthday is also 11 weeks away. We are getting there one day at a time :-)

Sunday, August 10, 2008

Emily cleared, she's coming home.

I really don't know what her level is or the details. She is coming home and I will update the blog tomorrow.

Today we are going to get fish for the aquarium.

Saturday, August 9, 2008

Emily is still in another night, her level rose again

Emily went from a .14 this morning at 6 to a .27 at 6 tonight. Tracy thought the nurse was joking when she told her. We all expected her to clear tonight. Emily is OK with the results. The next try will be in the morning. She is where she needs to be so she can keep hydrated and be given Leukovorin to protect her good cells at these levels. I really hope she drops overnight and she is home tomorrow.

Poor Emily, still waiting

They took Emily's blood this morning and she was at .14, still not low enough to come home. We will try again at 6pm tonight. Let's hope she makes it. This is turning into the longest stay.

Friday, August 8, 2008

Emily is having a hard time clearing

Emily went from a .30 at 7 this morning to a .33 at 7 this evening, not the direction she wanted to go. The next test will be at 7 tomorrow morning. I am going to suggest Tracy asks they wait until 9am just to let it drop more. Let's hope she gets out tomorrow. I can't beleive most people clear in 72 hours. I hope if anything that the chemo sitting in her system longer, just makes it work better.

Tonight on my way home I bought Emily a 10 gallon aquarium and set it up tonight. It will be all set to go for tropical fish by the time she gets home. I will let her choose which fish she gets. I had an aquarium when I was young and I remember going and choosing the fish was really fun so I want her to get to do that.

Friday's update

Emily is still in the hospital. Last night at 11 her Methotrexate level was .30, and she will need to be lower that .10 to be able to go home. From our experience she will be in at least until tomorrow, and we are worried about making out before Sunday. She is so close to being complete, but every time towards the end of these treatments we all get anxious and want to get out of there.

Tracy has been doing most of the hospital time and I've been watching Haley and working. As I have been saying, we are all looking forward to the in-patient part of chemo being over.

Emily's room mate is a little girl also from West San Jose. She was just diagnosed with Lymphoma and has 20 weeks of Chemo, so that shows how different the treatments can be, and puts into perspective how sick Emily is/was when she started.

Wednesday, August 6, 2008

Latest updates

We weren't certain what last week's delay would have on the over all schedule. Today they let us know that there are going to add a week of rest time between phases. Rather than starting phase 4 on August 13th, they moved it back to August 19th. It will be kicked off with Emily being put under for another LP, and she will also start the Dexamethasone that day. In phase 4 Dexamethsone replaces the Prednisone that was used in Phase 1. The first day of school is August 20th, so it's highly likely she will be able to attend.

This afternoon Emily had an Echogram test on her heart. There is a drug in phase 4 that is tough on the heart, so they do an Ecco before the phase as a baseline, and then will do one after, to observe the effects on the heart. The results of the echo were normal, as we expected. It was nice they were able to get that test done while we are there in the hospital sitting around, why not get as much done as possible.

Today will be Emily's last dose of 6MP until maintenance, another milestone.

Emily is feeling much better today. She refuses to eat while she's in the hospital and that has some effects on her mood, but I know it's just part of what we have to go through, and looking forward to busting her out this Saturday. I am taking the day off tomorrow, she and I are finally going to make that video we promised at the beginning of the phase and will post it on the blog when it's done.

I was thinking that it has been a long time since I thanked everyone who continues to read this blog, but also to everyone who has been supporting us through this ordeal if they read the blog or not. Tracy and I don't know how we could have faced all of this without all the help and support. Thank you.

Em Chillin in 1 North

she's feeling better

Emily is now off the chemo and is on hydration. She feels better this morning. What a tough girl she is, now it's the waiting game. Best guess would be a Saturday morning release. until then we will do our best to keep her busy. I am going to take the day off tomorrow to go play with her at the hospital.

Tuesday, August 5, 2008

Stuck to the screen

Emily is almost done with the methotrexate, at 1o she will switch to IV hydration. She actually get saline and %5 dextrose for "nourishment". Emily is still not feeling well but hasn't thrown up in a few hours. They are now fighting the naseau with Ativan, Zofran and benedryl. Emily is just lost in her TV today, and very quiet. She didn't want to talk to me on the phone, and isn't talking much with Tracy. At home we try our hardest to limit the TV and access to screen time, but in the hospital all bets are off, especially when she's feeling like crud. We can't wait for that hydration to start. Like last time they are going to increase the rate of her IV pump to clean her our quicker, and to help protect her kidneys and other impacted organs.

We lost the private room already. At least we got one night alone.

Emily had a rough night

Emily started methotrexate around 10pm last night, and got sick right away. Despite Zofran and benadryl she wasn't able to sleep because she was throwing up all night. It was a really rough night on her. Right now she is asleep. She has about 12 hours to go on the methotrexate drip. We keep reminding her that this is the last time she has to do this.

Monday, August 4, 2008

It's official, she's in

Emily had her procedure around 1 this afternoon, pretty much on schedule. I had a very busy work schedule today so I couldn't be there for the entire thing, but joined Tracy and Emily for the pre-op, and for Emily being put under, then I went back to work. Emily recovered from her procedure quickly. She was very hungry when she woke up and Tracy was prepared, as usual, with a snack for her in the recovery room. Then Emily was admitted to 1 North and got a private room ! She is currently getting hydration and will start the high dose methotrexate IV around 10pm tonight. We are hoping she gets out Friday night or Saturday morning, but as we have seen each time, it's almost impossible to guess how long she will be in. We may or may not be able to keep the private room, but at least we are on our "home floor" so the reasons for losing it would be because a child who is more ill than Emily needs it, in which case we would understand and gladly move.

The great news is this is the last scheduled over night hospitalization that we are aware of, for the rest of chemo. The next two phases are going to be rougher on Emily physically than this phase, but mentally this phase has been challenging to Emily and to the whole family. Just today juggling between having a child in the hospital and delivering performance evaluations at work is an example of what life has been like lately, and of course Tracy has just as much or more to coordinate on her end.

The next phase is going to start on August 13, we lost a little time with the delay. More on that later in the week.

12:10 Today

Emily is scheduled to have her LP and to be admitted at 12:10 this afternoon. Like we've learned countless times before, nothing is %100 in the in hospital, but it's looking good for today. Her procedure is at least scheduled, but that doesn't mean there will be beds, so that's the part that is wait and see until we actually start. I will have an update tonight after work.

Saturday, August 2, 2008

Procedure canceled until Monday

Packard was so busy Friday that there were not enough anesthesiologists to handle the patient load. Since Emily's treatment is not considered an emergency she has to wait until Monday. Her procedure is scheduled for 12:10 in the afternoon.

Besides Emily the rest of us are still getting better from the stomach flu bug we had this week, so no big plans for the weekend.