Big Day at the SF Ballet

Before I get to the fun stuff from today, a report on Emily's health. Emily has a virus, and so her ANC is really low, at 140. To remind you ANC stands for Absolute Neutrophil Count, and that is a calculation based on different types of white blood cells. Healthy people have anc's in the 2000's, it's what helps us fight off all the virus and infection we come in contact with. (At least that's my non doctor version of what ANC is) So the big worry is if Emily got a fever now we'd have to admit her to the hospital, and given how close we are to Christmas there is a real chance we will be spending Christmas in the hospital. I hope it doesn't happen, and have no control over it, so it just is what it is.

As a result they are withholding Chemotherapy this week, in hopes her ANC returns to an acceptable level. Her Chemo suppreses ANC and it's a fine juggling act to keep it in the range they want. Too high is bad, and too low is risky to her for other reasons. From a cancer point of view I don't think this is a bad sign, but from a possible infection point of view, it's very scary.

The Oncology team is pretty liberal about these things and when we told her we had tickets to the ballet today, they said it was still OK for her to go, as long as she avoided people who were caughing and to wash her hands often.

NOW ONTO THE FUN. Emily had a very, very special opportunity presented to her. The other day when I wrote in the Blog that we had Nutcracker tickets, a co-worker of mine had read the blog post and then sent me an email that he has a contact who is the lighting engineer for the Ballet company, and asked me if Emily would like a back stage tour, and to sit in the lighting booth during the performance. This offer was so unexpected and so special to us. Emily got to go back stage before the show to watch the warm up. She also met other people associated with the show. stage managers etc. And probably the most exciting thing she got to do, was to turn down the house lights, and then turned them completely off for the second Act of the show. Emily actually got to participate in the performance and she's still talking about it. She was able to sit in the lighting booth for the second act. This was definitely a high light to her holiday season. My Mom was with Emily and also said she had "the best time".

This week going forward we are just hoping for no fever and for her anc to raise. Right now I feel like she shouldn't go to school until her anc is above at least 500.

After Dinner

Last night we went out to dinner in Sunnyvale on Murphy Street. It was really cold last night, and Murphy street was all decorated with lights, it really was beautiful. We had a good dinner at an Italian place we like and had a good time as a family, enjoying our two beautiful daughters.

After we had left and were walking down the street, the people who had been eating at the table next to us were right behind us. They were also a family with a teen aged daughter. The Mother in this family then said, "Excuse me" and we turned around, and she asked us "Has that little girl just been on Chemotherapy?" And we said "yes", and then she got teary and out of the blue whipped off her wig, which I didn't know she was wearing. She wanted to let Emily know that she too was going through Chemo, and that she was so impressed at how brave Emily was to be walking around bald and to be looking to happy and up beat. We stood there on the street and shared war stories of chemo. At one point the woman said, "but I have a port" and then Emily said "I have a port too" and they both laughed and said how much easier it had made their treatments. This woman had also been diagnosed in March, mentioned surgery and we think she was a breast cancer survivor. Her chemo had only been 4 months and she was recovering. She was sad to hear Emily still had 15 more months to go. It was a really interesting but great run-in and so up lifting to me. There is always hope.

Tonight Tracy and I are going to the Intuit Holiday party, which is held at City Hall in San Francisco. It's a great event and we have a room at a nice boutique bed and breakfast, while Emily and Haley will spend the night with my Mom up in Woodside.

Emily doesn't have much medically coming up this week except for labs. On Tuesday she will leave school early for labs, and then I got she and my Mom two seats at the San Francisco Ballet's Nutcracker which they will go to after labs. Both Emily and my Mom are excited about it.

Consultation with Dr. Link

This morning was Emily's clinic day, and we also had a consultation with Dr. Link to go over the results of the CT scan, and to ask any other questions we had. It was a great appointment, he told us her CT looked great, which we knew already but still coming directly from him it made it official. He also said that the mass she has in her chest is still getting smaller and smaller each time we do a scan. He seriously doubts the mass has Lymphoma in it because Lymphoma grows very fast if it's in you. So this is likely a mass of tissue left over from her massive tumor she had when she was diagnosed. I asked him why we don't blast it with radiation just to be sure. He told me that they, he in fact, has done a study where they did radiate the masses, and didn't, and there was no advantage to radiation, in fact it only introduced complications and didn't help at all. It is reassuring that they have done a study on this for two reason, I am less worried about letting it be, and it also shows that these masses are not uncommon. We've been told it's likely Emily will have a small mass in her chest forever.

Dr. Link also told us that Emily had just passed through a point in treatment where they sometimes see relapse. This is the second such hurdle she has made it through without complications. He explained that each time she makes it through one of these milestones without relapsing it puts her chances of survival higher and higher. The next big milestone is a year from March when we stop the chemo. But he told us that most people who do not survive Lymphoma are never able to make remission, and Emily has been in remission since last April.

We talked about the port and when to remove it. I can tell Dr Link is ready to take it out now, but the NP wants to wait for next month, and I think Tracy is still mixed on it. I can't wait to get it out, it's the right thing to do, and right now is only a possible point of infection and clotting, it's not serving a real medical purpose. If she clotted again I would be angry we didnt' remove it.

I asked Dr. Link directly, "so when I am asked can I say you think she is doing great" he said "yes, you can say that."

I don't know if he knew it, but he delivered the best Christmas gift I have ever received.

I mentioned this before, but want to say again how thankful Tracy and I are for Stanford, Packard Children's Hospital, Dr. Link, Karolina Watson, the Day Hospital Staff, the staff on 1 North, Hematology, Radiology, Cardiology, the APU, APU recovery, the Surgeons, the Play Therapists, the Interns and residents, and yes even Stanford ER, without all of you I can't even imagine getting as far through this as we have.

And while I am at it, big thanks to my Mom and Carol and Steve (my-laws). All of these people have put in countless hours and support to get Emily this far, and I am looking forward to another year of kicking cancer in the rear.

Emily's CT Scan is CLEAR

About an hour after I posted tonight I got an email from Emily's NP saying that Dr Link had read her scan tonight and wanted us to know that is looked great, no concerns. He will give us the details on Wednesday but we can relax and know that Emily's treatment remains on schedule, and this is real proof of that. Emily went through a lot to have that CT, I was so happy to tell her the good news, just as she went to bed.

Done with December Prednisone

Today was the last of 5 days of high dose Prednisone, what they call a "Prednisone Flash". Emily did better this month than last month with the food cravings and puffiness, but yesterday she started to get depressed and it got a little worse today. We still managed to have a nice, and productive weekend.

We got a lot of Christmas decorating started and some of the big stuff out of the way. On Saturday morning Emily and I went and got a tree. We got a really nice one, probably the fullest tree we have ever had. It took some doing, and two stands to put up, but it's up. I also cleaned the gutters and put the lights on the front of the house. We also got out all the decoration, for all over the house but didn't get much of them up, that will happen over the next few days. Tracy worked today/Sunday so we didn't get as much done and needed some rest after yesterday.

Last night we went out for dinner, for sushi. We went to our favorite place in Mt. View. After dinner we went out for Ice Cream at Rick's in Palo Alto, they actually still make their own ice cream. Emily and I highly recommend the Industrial Chocolate, it's really good.

This coming week Emily will have labs. We are also going to see Dr Link since he was out last week, to go over the results of the CT.

Hard having to wait

I had expected that we would have seen Dr Link yesterday and could have gone over the CT scan the same day it was taken. Usually they are really good at expediting the results of tests for us, because they are aware of how stressful it is to wait. We didn't know but were informed that Dr Link was out of town, so we will have to wait until next Wednesday to hear the results. Hopefully he will be back sooner and will call us earlier, but there was no promise it would happen. It was really hard today when I was asked multiple times "How's Emily, how did yesterday go?" I want to smile and say "she's great" but I can't I feel if I do I am going to jinx the results so I just say, "she seems great but we are waiting some test results" which sounds so negative to me. It's going to be hard for me to really relax and even think about the holidays until I hear some news, and of course I really hope it's good news.

Emily is doing great, we are now on day 2 of this month's Prednisone flash. She doesn't seem to be having too hard of a time on them yet, and we only have 3 days to go. Her spirits are still high. Tonight she is going to a bake sale for a local school that her brownie troop is supporting.

This weekend we will be getting our Christmas tree, and I will be hanging the lights on the house.

December Chemo day.

Today was a really long one, and poor Emily had to endure 4 different IV pokes. With all best intentions Tracy had lined up the CT to be on the same day as the IV Chemo so Emily would only have to be stuck once in the vein. We showed up at the hospital at 8:30 and waited....then around 9:30 things started to happen. They put a Sinera patch on each of Emily's arms. Sinera patches warm and numb the skin, making it a little easier to find a good vein. We told the Radiology Dept that we wanted to keep her arm accessed so we could get Chemo later in the day. So they accessed Emily's left arm. The nurse did a really poor job, taking a very long time digging around trying to get the vein. She did such a bad job that there was blood coming from Emily's arm. We went on with the CT and the put a dressing on the IV for later use. We were already concerned that the IV didn't look like it had been done very well, and that Emily might have to get another IV when the Oncology nurses saw what Radiology had done. Well we learned that you can't even give Vinchristine in an IV that has been placed in a joint like an Elbow. The risk, and I'm not kidding, would be arm amputation if ANY of the Chemo leaked out into her joint. Well this was already a bad IV and they just won't risk the complication, so Emily had to have a second IV placed in her hand. It took two trys, with the first one being totally unsuccessful. Emily received her Chemo after they finally accessed her vein in her hand. Then she needed to have her Port flushed. We aren't using the port and is why we had to do all these IV's, but it still needs to be flushed once a month with Hepron to make sure it doesn't clot. We actually did her labs through the port today, since we had to access it anyway we wanted to use it, rather than just flush. So all of this took around 6.5 hours to complete. She also had her exam from her NP and everything looks good. We won't get CT results until next week, since her Dr. is out of town. He may be able to review them from the road but worse case is next Tuesday we will meet with Dr. Link and go over the CT. I wish we didn't need to wait that long, and I hope someone can give us good news sooner.

When we were done with the CT and Chemo there was a ballet performance at the hospital that Emily was able to attend. She really enjoyed it, and got a chance to meet the dancers and take pictures with them. The performance was a nice end to a long today.

Emily started her 5 day Prednisone this morning, and will continue with 6MP and Methotrexate on their schedule.

Emily is doing really well in school and lately her attendance has been near perfect. She is learning a lot, especially a lot of math. She is also active in her Brownie troop. Last night her troop decorated a Christmas Tree in San Jose for Christmas in the Park.

All in all things seem to be going well. I really want those CT results though.

December 1

This week is a bigger week than the past several have been. Emily is going to have her IV treatment, a blood draw, and a CT exam this Wednesday. Then on Thursday she will have another 5 day course of Prednisone, yuck. We are nervous about the CT exam, it will be a real test of how well treatment is going.

We had a great Thanksgiving weekend, Emily spent two nights up in Auburn at her Grannie's house.

I will post more after the CT on Wednesday.

Happy Thanksgiving, my 200th post.

It has been a long year, with many ups and downs. I am so thankful to have my family together on this Thanksgiving. Emily has been through so much, and she looks so good, I pray that that continues. I am thankful my Mom survived her Aorta surgery, just weeks after Emily was diagnosed. I am thankful that through all the stress and trials that our family has remained strong and positive.

This holiday and my experience this year also brings a new layer of sadness and awareness to the forefront for me. There are families who are not as fortunate as we are, who have very very sick children in the hospital. I can't imagine how they pull up the strength to be thankful. I pray for them to get the strength to make to through. It's a long and sometimes lonely road. I wish I could help more.

Emily is doing well, we went to San Francisco last night and had a really great time. My Mom, Haley, Tracy, Emily, and I went out to dinner and stayed over night. It was a really fun time for all of us. Today Emily had to go have her labs drawn and her levels were close to what they were last week, which doesn't seem to be alarming anyone. Next week she has her monthly chemo, and we have a CT exam so have a look inside. We are really nervous about this CT since it's the first look in a while and the first since we have gone on maintenance.

15 more months to go.

Donate to fight Lymphoma and Leukemia

We had a great weekend. I arrived home from Tucson in time to join Tracy and the girls over at our friends the Hansen's for dinner. It was a fun time and a great way to start off the weekend. On Saturday morning we all went out to breakfast together, and then went on a family hike. Haley and Emily both really enjoyed being outside on a brisk fall morning. On Saturday night we watched a movie together. On Sunday, Tracy and Emily went to a girl scout tea in the morning, and then we all went over to a friends for the afternoon and for an early dinner. It was a busy weekend but a fun one too.

This coming week is Thanksgiving and we will be going to Tracy's parents house up in Auburn.

Emily has labs this week, and then next week is scheduled for her second IV treatment in maintenance.

I wanted to take this opportunity to give each of you a chance to donate to help fund Lymphoma and Leukemia research. A friend of mine named Mike Golliday is doing the Leukemia and Lymphoma society's "Team in Training" Challenge. He will be riding 100 miles on his bike to raise awareness of Lymphoma and Leukemia. This is a great way to fund research and support Mike. Any donation helps and goes towards a great cause. If you can donate, here is the link to do so.

http://pages.teamintraining.org/sj/tdps09/mgolliday

One from the road

This week has been good for Emily and the family. Emily continues to do well and is getting more and more involved in regular activities. She still struggles with being bald and some of the side effects of the chemo. for example she doesn't really run correctly anymore, when she does you can tell something is wrong with her gate. But all in all the doctors say she is doing great, and her lab results have been what the doctors want to see. She continues to be on a full dose of her maintenance medications.

This week I am in Tucson AZ, on a business trip. This is the first time I have been so far from the family since Emily was diagnosed. I was really nervous about coming because I was worried that something might happen while I was gone, but I also knew that was irrational and that going on this trip would be a good thing for me (and my company). It's turned out to be easier than I expected. I have been traveling to Tucson for business regularly for the past 11 years and I have a very good group of friends down here, who all have been so supportive of us during Emily's illness. So, it's been great to be here with friends and getting some work done, just like the old days. I just miss Tracy, Emily and Haley so much more than I ever did when I traveled before.

I know with Thanksgiving coming up I have a lot to be thankful for, and that's something I hope you all will think about when you gather with your loved ones this holiday season, remember what is really important.

Our Week

Emily is doing well getting back to doing the things she normally would be doing. She is more challenged by school than she has been in years past, partly because she missed the first two months and partly because second grade is pretty tough. She is also going to Brownies again and requesting play dates as often as we can line them up. She has plenty of energy and reports to feeling "fantastic" most of the time. This week she also lost her front tooth, one that had been loose for months. The tooth fairy visited the same night.

This weekend Tracy worked so we didn't do much. Tracy is getting her two weekend days for the month out of the way. This morning Tracy wanted to rest, so Emily, Haley and I went hiking in the hills above Cupertino at a place called Panchetti Ranch, off Monte Bello Rd if you know the area. The weather was perfect and we had a great hike. We did about 2.5 miles round trip and I didn't need to carry Haley at all. Emily still has weak legs from treatment so a hike like today was really good for her.

Treatment wise everything is going well. We have been %100 so far at getting every dose of every medication. There are so many pills on different schedules it's hard(ish) to track. We are using Tracy's I-Phone to remind us to take medication with alarms. This next week she will have her blood checked again with a lab draw. She told me today that she didn't even feel the butterfly needle when they drew her last week, it was the anticipation that she cried about. In a few weeks she will be used to it I bet.

Other than treatment this week Emily has school and I will be going on a business trip to Tucson. I haven't traveled away from the family since Emily got sick and I am nervous about being away but I also know deep down things will be fine.

Blood draws

Today Emily had her labs. It was the first day they stopped using her port to get her blood. To remind you, she has an implanted port that can be used to attach an IV or to draw blood, it goes directly to her heart. The port is really helpful if you are getting IV medication as often as Emily was, and it's a tremendous convenience to have it for blood draws. Now since she is not getting as much IV medication they want to remove it, because there is always the danger it could cause a blood clot, or become infected. Since Emily has had a blood clot, it makes them want to remove it even sooner.

Emily has been really worried about stopping the port. It means they have to take blood from her arm just like the rest of us, but she still needs to do it once a week. She has a lot of anxiety about the needle. Today Tracy said she was refusing to get out of the car or go into the clinic, and was crying and really scared. The GREAT news was once she got in, they were able to draw her blood on the first try and she did it without numbing cream. They have a guy, I am not sure of his title, but all he does is blood draws and IV starts on kids, and is really good at it. He said Emily has a couple of nice veins to work with.

This all means that she will probably have surgery in the near future to remove the port. We can probably wait until after Christmas, but I'm not sure.

Once we get into a routine Emily can have her weekly blood draws done at an external lab if we want. One much closer to school ideally. That way she'll only need to go to Stanford once a month.

Maintenance setting in

We are starting to settle into the maintenance phase of chemo. Emily seems to be feeling really well, she has much more energy than anyone in the family or extended family for that matter. Treatment is pretty easy, she just has a pill regime that we have setup for her and us to follow and so far no doses have been missed. She is on her 5th of a 5 day course of Prednisone, with 2 more doses today to wrap that up. Since it's just a 5 day course we aren't seeing as many side effects as when she was on it for 35 days. We do see her increased appetite and some depression, the only times she tells me she is sad she has cancer is is on Prednisone or dexamethasone. That shows the profound effects that medication has on a person. This week she will continue to take her 6MP and on thursday take her weekly Methotrexate.

Her hair is definitely starting to grow back, she has a visable layer of "fuzz" starting to come in. She loves us talking about it and making a big deal about it, which we do.

Tracy and I are noticably less stressed, the mood around the house is just better all around. Now is the time where Tracy and I can start to take care of ourselves a little better. I saw my eye doctor today and will see my primary care doc tomorrow with concerns I have put off while Emily was so sick. I also have plans to start to exercise again, which is hard to start but I know will have positive pay offs if I keep with it.

This week Emily has labs, that's it!

First Maintenance

Emily had her first maintenance appointment today. She had her vital taken and then she got Vinchristine IV. Tonight we will also start her pill called 6mp, which she will take for the next 18months every day. She will also be taking Prednisone once a month for 5 days, we will start that tomorrow because you need to get 3 doses in each day and today was too late. She will also be taking methotrexate pills, once a week. She has had methotrexate IV and IT before but this is the first time she's taken the oral version of the medication.

I was very concerned and actually really upset yesterday when I misinterpreted the results of her recent labs. Her ANC was over 3000 and her WBC count was really elevated. If she had been on chemo it would have been odd for readings that high. When I asked Dr. Link what he thought of her lab results he thought they were great, he said it means her bone marrow is working. So the results I had interpreted as bad were actually good. Both Dr Link and our NP Karolina were very nice and explained to us that many families go through a lot of stress when they go into maintenance because of the illusion of less care and a big change in routine. I can tell in how Tracy and I have been acting that the stress has been getting to us, but I am also hopeful that we will soon be able to relax and enjoy the milestone that Emily has achieved.

In early December she will have another CT Scan and chest x-ray to have a see what's going on inside. Hopefully in late December she can have her port removed.

I can't believe it's going to be a full month until her next exam ! :-) Go Emily.

Emily's Birthday weekend

We have managed to stretch out Emily's birthday nicely this year. This week we celebrated twice and next weekend is her party with friends.
On the 30th, her actual birthday, we had a mexican dinner at home that Tracy and I made. We had my Mom over and it was a really fun night. Emily was extra excited about her birthday this year. It was also more special to Tracy and I than it may have been in the past. I was so thankful for a happy girl on her birthday. She worked really hard to make it to 7. We had cake after dinner, Tracy made it and it was one of the best chocolate cakes I've had in a long time.
Friday was Halloween, Emily and Haley had a lot of fun. We live in a great neighborhood for trick or treating, lot's of people out and having fun, but it's very safe and low key. Haley was a Lady Bug, and Emily was Dorothy from the Wizzard of Oz. Both girls were really excited about trick or treating, Haley is just old enough to get it. Tracy and the girls went out while I stayed home and passed out candy, then Tracy came home and I went back out with Emily to do another block.
On Saturday we had a birthday dinner for Emily at a sushi place Emily and I go to for lunch. Since eating out with Haley is a challenge we had her at a friends house. Emily invited her friend Olivia to come with us and to spend the night at our house. Dinner was OK, the service was really poor which is a huge pet peeve of mine, but we had a fun time talking and enjoying the girls. We all went over to our house after dinner for cake and ice cream. We actually had enough cake from Thursday night and finished it off. Emily opened another round of gifts, she seemed to really like all of them. We gave her a new pink razor scooter to replace her old one she had broken a while back. After gifts Emily and Olivia watch TinkerBell which Grannie and Grandpa Steve had given Emily for her birthday. Emily and Olivia set themselves up in front of the TV with an air matress and their sleeping bags and watched the movie. Foolishly Tracy and I thought they would go to sleep on their own, but at mid-night we had to go tell them to be quiet. I don't think it was a great idea to let them stay up that late, but birthday's happen once a year, that's the excuse we used.

On Wednesday is Emily's first IV maintenance appointment, and we will start her pill therapy.

Happy Birthday Emily

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

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.

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.

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!

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.

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.

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.

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.

Pumpkins

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.

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.

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.

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.

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 !

http://www.active.com/donate/ltnPittsb/2484_abasham

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.