Thursday, October 30, 2008

Happy Birthday Emily

Today is Emily's 7th Birthday ! She is really excited about it.

Tuesday, October 28, 2008

Birthday week

Emily had her weekly exam today and it went very well. They seem to be very pleased with how she is looking and bouncing back from stage 4. Her anc was around 1000 so she's not neutropenic. Next week she will start maintenance if her anc remains about 750. She most likely will make that criteria unless she gets a cold or virus of some sort. Our NP says that she sees lower anc levels this time of year in all her patients with all the colds and flus being passed around when the kids go back to school. Personally I think she will be well above 750 she is feeling so well. They are not going to give her chemo through her port, they will access a vein in her arm. The goal is to make sure we can do it without the mediport, so it can be removed soon. That will be really hard for her since the port makes is so easy.

On Thursday is Emily's 7th birthday. We are going to celebrate her birthday on the day itself with just our family. Then Saturday night we will celebrate again with her Grandparents, Emily wants us to get a sitter for Haley and for us all to go out for Sushi at her favorite place, Yakko in Mt View. The following weekend she is having a small party with some of her friends, we are going to take them to see High School Musical 3, which is a big deal to Emily.

Sunday, October 26, 2008

Our first family camping trip.

This weekend we went camping at Portola State Park. We lucked out with really warm weather during the days, in the mid 80's. This was the first time either Haley or Emily had gone camping. We went along with our friends the Scotts who have daughters the same age as Emily and Haley. Emily was so excited and feeling so good, I don't think she sat still the entire night. We were setup in 3 tents and Emily and Oliva who is also 6 shared their own. They told us they were going to stay up all night, and they tried really hard, but we noticed the lights go out and the chatter stop around 10:30. Tracy and I had Haley in our tent, and Rebecca and Simon and Stella in theirs. It got really cold during the night in the high 40's. I was surprised how well everyone did, we were up at the crack of dawn wiht all those kids, and at one point Tracy and I had all 4 girls with us in a 3 person tent. We had a great time and went on a very short hike today before we ate lunch and went home. Haley fell asleep 6 minutes into the car ride home and Emily about 15 minutes later. We all had a great time but agreed that next time we need to stay for two nights, it's a lot of effort packing and setting up, and it would have been more fun to have more time to hike and explore. It was a good first run for us. Camping with 2 year olds is tough work as well.

Em has labs and an exam this week. She is still not on any medication and will start maintenance offically next week when she will have some Vinchristine IV, and start her 18 month therapy of 6MP.

Wednesday, October 22, 2008

Mid week post

Emily went in for labs again yesterday and she is improving on all levels, recovering as expected from phase 4. she is still neutropenic so we are still being cautious about contact with other people. By this weekend she should be back to pretty normal. She is feeling great and not really aware that her levels are so low. She will have labs again next Tuesday, we get a full week of no scheduled trips to Stanford. Emily is having a hard time transitioning back to school, she is not understanding everything and is getting frustruated. Tonight I coached her on some things to ask her teacher when she is having a hard time.

This weekend we plan to go camping at Portola State Park. And next week is Emily's 7th birthday!

Sunday, October 19, 2008

Action packed weekend.

We had a fun weekend with lot's going on. On Saturday we had the walk-a-thon at Country Lane School, which is a annual fund raiser for the Home and School Club. Emily did several laps, enough to win an Otter pop and called it a day. It's a really fun event we have done it every year we have lived here in our home. After that we took it easy around the house before we headed over to our friends the Scotts for dinner and so the girls could play. They have 2 two girls roughly the same age as our two and they all get along really well. The Scotts have an outside fireplace and we spent most of the evening enjoying the nice fall weather next to a warm fire. The kids ended up inside watching a video while the "grown-ups" sat and talked outside. It was a fun night. We are going camping together next weekend so we talked a little about that up coming trip.
Today we had a crazier day, with Emily and Tracy going to the ER to have Emily's blood checked. We noticed that she had some bruises that were unusual and wanted to make sure her platelettes were at a high enough level. They were and it was a false alarm, but she just had a transfusion for them and we wanted to make sure she didn't need another one. I also got in a nice hike in the late afternoon with my friend Rob later in the afternoon.

This week Emily will have labs on Tuesday and Friday. We are expecting that she will start to recover her blood counts this week. We plan to have her in school all week except when she has to go to the clinic for lab draws.

Thursday, October 16, 2008

Today the transfusion caught up to Emily.

Today Emily finally had to have that transfusion that has been chasing her for a few days. Once again she was borderline on RBC's but getting pretty low on platelets. We had a choice, transfusion today or tomorrow because of the lagging effects of them chemo they would not have been comfortable letting her go all weekend. Even though she isn't taking medication right now, the effects of the last course of cyterabine are kicking in, as expected. They warned us she would be really low after this phase and that's why she has 3 weeks off, at least, to recover.

Even though her levels are so low, you really wouldn't know it. She has been going to school, holding daily dance parties here at home, and tough as ever to get to bed at night. She's just amazing when it comes to putting the hard things aside and just dealing with what she has to. It amazes me on a daily basis.

Next week she will have labs to continue to monitor her blood levels, and she will also have a physical exam to check how she is doing.

Tuesday, October 14, 2008

Phase 4 ends

Tonight is Emily's last dose of 6TG which will end up phase 4, which consisted of re-induction and re-consolidation. After she takes her pill tonight there is no chemo planned at all until November 5th, which is the first appointment in Maintenance. That will give her 3 weeks of rest and time to regain her normal levels. This will definitely be the longest break she has had since March. I must admit I am a little nervous about that long of a break right now, but I know I need to learn to be comfortable with fewer treatments. There is a certain sense of security that the disease will not come back when she was going through all the intense therapy, and a certain feeling of worry that intense treatment is ending. These feelings are normal, today I talked to a friend of mine who's son is just ending maintenance and he and his wife have similar feelings to Tracy and I, it's just hard to transition.

Emily is having a hard time getting up and going to school. Once she is there she is having a good time and coming home happy she went. So after a very rough start she went to school around 9 and stayed all day. After school Ms. Ewers and Mrs. Smith dropped by for a visit and Emily was really excited about it when I came home. Tonight Emily is having her nails done by Tracy and then plans to do some home work before bed.

On Thursday Emily goes in for labs and a possible transfusion, but at this point I am starting to wonder if she will need a transfusion in this phase, which will really amaze the Dr.'s. Emily must be really strong because on many of the phases she has exceeded expectations. All except for the Methotrexate phase (3) which seemed to have been her nemesis.

All 4 of us need to get the flu shot ASAP. We have to get the shot, not the nasal inhalation version. I didn't know this but apparently the inhaled version of the flu vaccination is live virus and people in the medical profession and anyone living with someone who is immunosuppresed can't have the nasal inhaled version.

Monday, October 13, 2008

Emily escapes another transfusion.

Emily went in for labs today, and while her levels had dropped since Friday, she still didn't need a transfusion. Everyone was pretty amazed, Tracy, myself, Emily, and the doctors expected one. It took a while to get the results, but Emily was in school by noon and finished the rest of the day. Tonight and tomorrow she will take her last 6TG pills, and then will officially be done with phase 4. She still needs to be watched for possible transfusions as there is a delayed reaction to some of the medications she is on. We are excited that it is looking like she will be recovered and feeling great on her 7th birthday which is coming up on October 30th.

Saturday, October 11, 2008


Emily has had a big Friday and Saturday. Yesterday morning she had to go in for labs. They expect that she will need a transfusion sometime soon, so they are doing labs frequently and scheduling day hospital beds for transfusions just in case she needs them. This time she was just on the border and didn't get a transfusion. Her ANC had dropped all the way from 1800 to 500, and her hemoglobin was pretty low, so we are all expecting that on Monday she will be transfused, though Emily has surprised us before. The medications she has been taking the last two weeks are supposed to get her levels really low so this is all expected. She didn't make school on Friday, but she has been going a lot. She did an entire day on Thursday.

On Friday night, Emily and Tracy went to a Girl Scout event in south San Jose. Emily went on a hayride and sang songs, roasted marshmallows, did some crafts, a petting zoo, a sack race, played tug-o-war, and had a picnic dinner. They had a good time but it was really chilly with the cold winds blowing. They didn't get home until 8:30.

Today we went on a big adventure to the coast to Half Moon Bay to get some pumpkins. We drove over on Highway 84 and stopped in the San Gregorio store to pick up some drinks to go along with the picnic we packed. Then we stopped at San Gregorio State Beach to eat our lunch. It was a super clear day with a chilly wind blowing. It made the surf extra big. Haley had never been to the beach since she has been up walking and talking so that part was fun too. She was really fascinated with the sand. We ate our sandwiches in the car which is on a bluff overlooking the beach and surf. Great spot. We walked to the edge of the bluff and then down onto the beach. We only stayed about 15 minutes since the beach wasn't really in the plans for the day. I was freezing cold and we were unprepared for that. It did make for a perfect place for lunch, though. From there we traveled north on Highway 1 towards Half Moon Bay. We stopped at a place called Arata Ranch. They have their pumpkins interspersed throughout their corn fields. They also have a petting zoo, pony rides, produce, and a very large hay labyrinth which Emily and I conquered. It took us at least 30 minutes if not more to find our way through. They have hay bales stacked up around 12 feet high making a really large and fairly challenging labyrinth. It was a lot of fun. From there we left and drove home over Highway 92 in Half Moon Bay over to 280 South. When we got to 280 and 92 we called Jake's Pizza in Saratoga and had them start a pizza for us, since we knew we would be there in 20 minutes. It was perfect: We arrived just as our pizza was coming out of the oven. With the kids so tired it was nice to have the food ready to cut the waiting time, especially with Haley.

Tonight Emily had her last dose of Cytarabine in her IV and we de-accessed her port. She is still taking her 6TG pill until Wednesday. As I mentioned before, Monday is labs and a probable transfusion. Her next big chemo is November 5th for her first maintenance chemo.

Wednesday, October 8, 2008

Emily had her last LP

Emily has her last scheduled LP today. It went very well. We arrived to have her port accessed and for a physical exam around 10:15. All the appointments went relatively fast, and her LP procedure started around 12:30. For whatever reason she was a little more disoriented and cold when she woke up, but after a little while was feeling well. An Oncology nurse stopped by the recovery area and gave the Cyterabine to her while she recovered from the LP. After that they sent us home, around 2:30. Before we picked up Haley from my Mom, we stopped at the Dutch Goose to get Em a grilled cheese sandwich. She and I played a round of pool too, her first time ever.

There is no more sedation planned in her treatment. She will need to be put under probably in January to have her port removed. This week we still need to give her more Cyterabine via IV, and she will continue to take her 6TG pills until next Wednesday. She will have labs on Friday and next Monday, as they expect her levels to drop really low and possibly need a transfusion. She has appointments for transfusions next week, but will only get blood products if the labs justify it.

Monday, October 6, 2008

thanks for the support

Emily is doing well. She is on track for her final LP this Wednesday. Her levels were high enough today that she didn't need a transfusion, which they had scheduled just in case. Her ANC is so high that Tracy is taking her to see Beverley Hills Chihuahua tonight.

Tracy, Emily, Haley and I want to thank everyone for their support so far. This weekend I was looking at the statistics for the Blog. We have had well over 20,000 page views, with over 1600 unique viewers, checking in from over 42 countries. When I view the report it's clear that we are not in this alone, and that everyday people are thinking and praying for Emily and the family. Thank You.

I will update the blog as I have more info about Wednesday and the weeks to come.

Friday, October 3, 2008

Emily is feeling great

Emily is feeling really good. Today she went to school. She didn't make the morning bell but got there about an hour late and stayed the rest of the day. When she got home I asked her how school went and she came over in front of me, smiled and jumped up and down. She was really excited to be back and feeling so good.

We are still giving her IV chemo and her pills here at home, and she still seems relatively unphased by it. We assume she is close to or neutropenic again so we are going to keep her out of malls and crowded places, but pretty much just do our normal thing. She will get one more dose of IV Cyterabine tomorrow, and then be off until next Wednesday.

We didn't take too many pictures of her when she was feeling bad, today's picture is from this afternoon in our neighborhood park.

Thursday, October 2, 2008

Emily is springing back to herself.

Emily had a great day and she seems to be feeling better and better every day. She is so much happier and in good spirits and is walking all over the house. She should be stomach sick because of the chemo yesterday, but she's not. She didn't go to school today but we are planning for her to return tomorrow, and to start going as much as possible. She will probably get neutropenic during this phase, and when we know she is, we may keep her home, but our goal is to get her going to school like any other 6 year old. She also wants to return. Today her Grannie was here and they hung out all day. Tracy gave Emily her IV chemo around 3, that went well. Her port gave a nice blood return, which means the clogging in the line seems to be resolved. Things seems to be going well.

My friend Angie is walking in a Leukemia and Lymphoma society "Light the Night" walk-a-thon event this coming weekend in Pittsburg, Pennsylvania. I know there are many Light the Night events this month around the country. Here is the link if you want to sponsor Angie in her endeavor which she is doing in honor of Emily. All the money given to the Leukemia and Lymphoma society goes to good use. They fund research initiatives, patient services, and education. Their website is really comprehensive on both diseases and their variants. Angie walks this Saturday. Thanks Angie !

Wednesday, October 1, 2008

Long.....Long day

It's been a really long day. I am writing this from the day hospital and we still have 1 hour and 15 minutes of IV hydration to go, so we should be out by 8pm. In all we will be here over 12 hours today.

Even though it's time consuming things are going really well. I think the biggest relief was when they took Emily's vitals this morning, her pulse was 99, which is totally in the normal range for a 6 year old. We hadn't seen it below 130 in almost 2 weeks. Her blood pressure also dropped. I was really happy to see that, I was nervous about her being put under while she was tachycardic. Tracy also told me that she was also really nervous about the pulse, but hadn't voiced it like I was doing, we both really relaxed when we saw she was back to normal levels.

Emily's port line was a little clotted when they accessed her port this morning. They had to give her a dose of TPA which is a blood thinner. After a half hour we were able to flush the port and get a blood return. This doesn't mean Emily had a blood clot, just maybe some fiberous precipitate at the end of the port. Tracy tells me it is common, and she often has to TPA ports on her floor.

After we resolved the port issue, it was time to go up to the second floor and check into the APU. the APU is where you go for out patient proceedures where you need to be put under. Emily was already accessed and she went under very easy for her LP. After waking up she could finally eat, she was NPO until the proceedure was done. In her recovery bed she ate a sandwich and a piece of chocolate cake.

From the recovery room we were transported to the Day Hospital for the IV Chemo. Emily got doses of Cyterabine and Cytoxin, tonight she will start taking a pill called 6TG, which is very similar to the 6MP pill she has taken through therapy.

Right now we are sitting in the day hospital because after Cytoxin you have to hydrate for 4 hours.

So what's next? Next week is Emily LAST LP. Today was her LAST DOSE of Cytoxin. She has to take the 6TG for 14 days starting today and then it's done. We also are going to give her 4 doses of Cyterabine this week and next week at home via IV, then she is done with Cyterabine. So really on October 14th, she will be essentially done with intensive Chemo. The rest of the phase is for her blood counts to return and for some possible transfusions. This phase brings her blood counts to very very low levels. It may take 3 or 4 weeks to recover.

We are getting very close to maintenance.