Wednesday, December 31, 2008

Happy New Year !


Tracy has to work tonight. On her floor at Stanford every nurse has to work a holiday, I am glad she was home for Christmas. I took this shot of the girls this afternoon. Look at Emily's hair !

Happy New Year !

Tuesday, December 30, 2008

Monthly Chemo done !

Today was Emily's monthly chemo and physical exam at the hospital. She gets her IV chemo every 4 weeks, so this is actually the second visit in the calendar month. I was thinking it was next week, and it wasn't until last night Tracy reminded me it was today. Since I am off of work I took Emily and gave Tracy a break from the pediatric oncology waiting room. It's not a super fun place.

Emily had to be peripherally accessed in a vein in her right hand. They were able to draw the CBC blood test through the peripheral stick. The Phleubotmist was really good and got her on the first try. Emily uses a Sinera (warm + numbing) patch, which helps with the needle stick, but she still has a lot of anxiety just before the poke, which she always apologizes for and all the nurses and we always tell her, it's ok to be scared, everyone is. The staff always tells us they wish all the kids could be as brave and as positive as Emily. I am happy she's so confident and positive, and comfortable in stressful situations, in fact I wish I were as tough as she is sometimes.

Her physical exam was quick and all positive. Everyone is on vacation so we saw a nurse practitioner who we haven't seen in a while, Erika. She was amazed at how well Emily was doing and how much she had progressed. Erika did a lot of the Lumbar (spinal injections) punctures on Emily in the Operating room, that's where we would usually see her. She cleared Emily for her IV Vinchristine. After that we went over today's lab results, which they had back in 25 minutes (WAY to go Stanford labs). Emily's levels look great. Her protocol calls for another week of %50 chemo, so we are staying on the same dose as last week, but her levels indictate that next week we will be going to %75. Then after 2 weeks at %75 she will be back on a full dose. This REALLY shows the impact of her getting a cold, she has to reduce her dosage, and that can't be good, so we really want to stress to everyone to stay away from us if you have a cold, yes just the common cold is horrible for her. We've been lax about it but are really going to step it up this cold season. This may lead to more home school days here and there, but it's her life that is at stake. I dont' mean to sound too dramatic, she looks great and these things happen, but want to do what I can.

Yesterday I had to go to the hospital pharmacy to pick up some chemo pills. When I was there I ran into Dr. Link. He was jamming out to leave on a ski vacation. He remembers that I am a ski fanatic, so he brought up skiing with me, which was nice that he was trying to relate to me. I told him I wanted to get Emily back on the slopes, and wanted to see what he thought. He said she absolutely can be skiing as long as her platelets are above 175K and today they were 534K so she's cleared to ski ! woo hoo. The very last thing Emily did before she was diagnosed was a ski trip, and I never thought in my wildest dreams back in March and April that we would make it to the slopes this year. Well I can say for sure we will be, and I am very excited about that. Emily can add skiing to another thing she did while on chemo. I love that Kaiser Permanente ad that says "I have cancer, but cancer doesn't have me." Emily lives that slogan %100, and in a way Tracy, Haley, and I do too.

2008, can't wait to say goodbye only 1 more day.

Saturday, December 27, 2008

Dec 27th.

We had a great Christmas and now have some time off before getting back to work and school. Tracy and I were able to get away last night up to San Francisco. For Christmas I gave Tracy a "night out on the town" and arranged for my Brother to watch the girls, while Tracy and I went shopping, out to a very nice dinner, and then to a comedy show. We also stayed overnight and went out for breakfast this morning and got home at 11am. The dinner was really amazing, we went to a place called Jariniere and did a Chefs tasting menu with wine paring. The owner to Jardiniere has won the Iron Chef contest on the Food Network and we had some really interesting and yummy courses. While we were having fun in the City, the girls had a blast with their Uncle. When we got home Emily put on a Magic show that she had been working on while we were gone. Of course it was a great show :-).

This weekend we have nothing special planned other than to rest and take it easy. Next week is labs on Tuesday where we expect to be told to resume treatment at %100. Emily seems to be feeling really well and I have few real concerns right now. It's a good place to be.

2008 has been a truly challenging and growing year for us. We have all found strength and courage we didn't know we had, we have made much stronger friendships and have expanding our circle of friends, we have learned what is important and what really isn't. All that said I am looking forward to a more restful and "normal" 2009.

Thursday, December 25, 2008

Merry Christmas and Happy Holidays

We are really enjoying the holiday season this year. It did seem to sneak up on us but we were able to get prepared enough to have a really relaxing and fun time with family.

Last night for Christmas eve Emily, Haley, my brother Nick, and my Mom went to church at 3pm for a children's service. Tracy and I didn't go to church and used to the time to get ready for today. We all went up to my Mom's house for dinner. My Step Sister Carrie and her husband Jason were there with their children, and we were also joined by the Scott's. Simon's Mom Jude and her friend David were also with us. Jude and David are here from England visiting Jude's son Simon and family. We had Tamales, a giant burrito, and a chili relleno. And the adults had a few Margartias. We all had a really fun night. Just before bed Emily put out some cookies for Santa.

We were woken up this morning by Emily who was excited to see what Santa had brought her. We got up around 7:30, which is actually late for us. Emily and Haley both got gifts from Santa. Emily has been wanting a night stand and Santa got her one that matches her bed from Pottery Barn. Emily also got some games for her Nintendo DS, some charms for her charm bracelet, and two tickets to High School Musical on Ice. Santa also left some candy. We think Haley had a warning from Santa because she had some candy coal in her stocking, but also made out pretty well. Both the kids were really happy and excited. Just what we wanted. We have a Christmas tradition that we make Breakfast and our family comes to our house. Tracy always makes the same Egg dish, and it's very good. This year it turned out extra good. We all had breakfast and then opened present from each other. I don't know why I even worried about Emily's gifts she loved everything. Tracy's parents gave Emily and I a Wii fit, which we are really excited about. We tried it out and it's even more amazing than I had expected. It was a really fun surprise.

We are going to spend most of the rest of the day here at home. We will be going back up to my Mom's a little later for dinner. We live about 20 miles apart and it's mostly freeway.

We all have had a great day. I am so thankful that we are all here celebrating together. I have a new perspective on life after what I have seen Emily and our family have had to go through, and holidays are much more special to me than they have been before. I am taking until Jan. 5th off of work and I am looking forward to having some fun with the family next week.

Emily continues on her %50 dose, she seems to be feeling great, and has tons of energy. I can't thank the staff at Packard Hospital enough for what they have done for us and how well Emily's treatment is going. Next week she has a lab draw and that's all that is planned medically.

Tuesday, December 23, 2008

Emily's ANC back above 1000, she resumes therapy

Emily had her labs today. Her ANC was near 1200 so she has resumed chemo at %50 this week. It is great news, we are all happy about it. Next week she should be back on %100 dosage and back to normal.

Monday, December 22, 2008

Christmas is rapidly approaching

I can't believe Christmas is this week, the year has flown by. Initially I was in the spirit and then last week's hospitalization threw me for a loop. I am back on track, but need to restart the Christmas cheer again. I think it's just me, because both Haley and Emily are really excited about Christmas and Santa's visit. Haley sort of gets Santa, she's 2 and understands that Santa is coming with presents. I'm not sure she really understands what a present is though. She's at that age where every other thing that comes out of her mouth is golden with cuteness. Emily also is still very much into Santa and mystified with how he gets it all done. Tonight at the mall I let it slip that I recently had a meeting with Santa, and her face lit up and she got all excited talking about what he might and might not bring.

I don't want to make the impression that I think Christmas is about the gifts, but I want to explain a delima Tracy and I have this year. When Emily was diagnosed and in the hospital back in March, she recieved a lot of gifts. And they kept pouring in for weeks after we were back home. We were and are so appreciative of everything that was sent, every card, every gift, every well wish. This is no exageration but we had to fill a whole SUV full of toys and part of my sedan when we brought her home after diagnosis. We joked I needed to build another wing of the house to fit all the gifts. So there you are, Emily has pretty much every age appropriate toy you can think of, in some cases we have duplicates. So the problem is I want to give her something special that she will enjoy, she's been through so much, this blog is a testament to that. She also doesn't want much. She wants a computer, which we have decided she is too young for, and she wants two packs of gum. That's pretty much all she asks for. Like I said I know it's not about the gifts, but I am frustruated because I want to give her something special and can't figure what that would be. I'm open to suggestions :-) I still have a couple days.

Tonight Emily and I went to Valley Fair Shopping Center. You could certainly tell we are in a recession, on Dec 22, I should not have been able to find multiple parking spaces on the first floor of the garage, at 6pm, but we did. Emily and I had fun buying Tracy's gift from the girls, and then Emily and I went out to dinner together. I can't tell you how much I LOVE hanging out with that kid. She's so cute and articulate.

Tomorrow Emily will be getting her blood drawn and if her ANC is above 1000 and her platelettes are above 100,000 she can resume treatment. If she resumes, which we expect she will, she will be on a %50 dose for a week, and then if she maintains a certain level will return to a %100 dose. Let's all hope she makes her numbers and gets back on track with treatment.

Saturday, December 20, 2008

Emily wins more hearts. :-)

I thought I'd take a stab at the post tonight, since I don't think I've posted for 6 months or something!

Today Gail (Chris's mom), Emily, and I drove to Marin to see a ballet called, "Sophie and the Enchanted Toyshop." It was an original ballet performed by student dancers at a ballet school called Marin Dance Theatre. Emily and I had seen the students perform a mini-version of the ballet earlier this month at Stanford. (You may remember from Chris's earlier post that that was a day of multiple pokes with a ballet reward at the end.) At that time we were able to meet the school's artistic director, Margaret Swarthout, the ballet's choreographer, Lynn Cox, as well as many of the dancers. That day, Lynn offered us complimentary tickets to the full-length performance for December 20. She gave us lovely seats in the 11th row which we thoroughly enjoyed. At intermission, Lynn found us, and may I just say that she was so excited to see Emily. She said that she was so happy we had come and that she had thought about Emily every day since she met her on December 3! She also said that the dancers who had met her were excited to see her again today, too. I had called the school yesterday, and this morning when Lynn got the message that we were coming, she went to see her students and asked them, "Guess who is coming to the performance this afternoon?!" And they said, without any prompting or anything, "Emily?" Apparently Emily had made quite an impression, to say the least! So, because of Emily's rock-star status, she was treated to a backstage tour (Her Highness let her grandma and mom come, too.) to see all the dancers again. And they were just as happy and excited to see her as Lynn was. Oh, how they fussed over her and admired her dress and special jewelry she was wearing. Emily could not help but brag to everybody that she got to go backstage at Nutcracker, too, and operate the house lights. Needless to say, all this special treatment made Emily feel very special.

Friday, December 19, 2008

Restful end to a crazy week

We are so happy that this week ended with all of us here at home. This week is also the very first time we went to the ER at Stanford and actually got better news than expected. Each previous time it had gone worse than expected, with her diagnosis, the blood clot in the subclavian vein, and the first fever with neutropenia. Part of me feels like someone was watching over us and finally decided that the Pepper's had had enough, and if that's the case they are right, we have.

The night in the ER was a testament for how much we've grown in the past 9 months. First of all, it's apparent that we are very, very experienced patients. Emily, Tracy, and I can have intelligent meaningful conversations with doctors about medicine and treatment. Obviously Tracy can do this, but Emily and I have come along way since March 9th. We were joking with the doctors and nurses and they with us. I remember the doctor telling Emily that he had just wiped a booger on his finger before he examined her to see her reaction, and she thought it was really funny and was cracking up....as they were drawing blood from her port. And when Emily was diagnosed I had to leave the room every time they drew blood because I was so squeamish, and now I can hold Emily's hand and actually watch them search for veins. We also know by face most of the staff in the ER, it's not as scary a place as I used to feel. It is sad that Emily has to go through this, but I am happy she feels as comfortable as she does, and I am glad that I have grown to be able to fully support her through it all.

On Wednesday night Tracy was working at the hospital when we got there, so she was running between caring for her child, and then running up stairs to chart her patients. At one point the ER docs forgot she was a parent and asked her to go grab something from the supply cabinet. She had to remind them that she was Mom, not Nurse. She is required by rules to wear her badge anytime she enters the hospital, so I can understand their confusion that night since she was wearing scrubs.

This weekend Emily and my Mom are going to another ballet this time up in Marin, since we know Emily is no longer neutropenic, it's a lot less worry about her around other people. Tracy and I have some Christmas shopping to do.

Next Tuesday Emily will have a blood draw to see if her counts are high enough to resume treatment. Let's hope they are.

I am really looking forward to Christmas this year. I know I am going to cherish being with my family and having a special day together.

Thursday, December 18, 2008

Emily is at home, quickest hospital trip yet

Great news to report. Emily was neutropenic on Tuesday, so I was following protocol when we took her in last night with the fever. However, since Emily's bone marrow is so strong in just one day her ANC had recovered to 540, 500 is the level in which they will let you go home. So, Emily was released early in the morning with a diagnosis of an upper respitory infection. With an ANC over 500 it's not life threatening. Right now she is fast asleep getting some rest so she can get back on track with her treatment. By the way this whole episode is not uncommon for Emily's treatment protocol and really stresses why we need to make sure to wash our hands and not to come around Emily or anyone with a comprimised immune system if you have a cold. The medical staff told us that at this time of year they have lots of delays in treatment.

This is obviously great news, and totally surprised the doctors as well as us. They were completely sure we'd need to be in a few days, everyone was surprised her ANC recovered so quick. I would guess it's pretty much a slam dunk that we will resume treatment next week, she has to have a 1000 ANC or better to resume.

Emily is back in the hospital

We had to take Emily to the ER and then she was admitted to the hospital tonight. She was neutropenic yesterday and is also fighting a virus. I pretty much knew this was going to happen, if you read the blog yesterday. With her ANC so low, I decided to check her regularly for fever, and tonight she felt warm and I got a 101.4, which is above the Oncology threshold if you are neutropenic, and it means you need to be in an Emergency room within 45 minutes. Since Emily is on immuno-suppresion drugs, time is critical in case she has an infection. To be blunt, this is the way many people pass away when on chemo, so it really raises the nerves and stress. It also shows what a roller coaster this is for all of us, one day we are celebrating that her CT is clear and that she is on maintenace, and then a week later we are in the hospital again for a unexpected complication. I swear everytime I let myself celebrate success in her treatment it backfires.

I took Emily's temp, and called Tracy, she was working tonight, so she was already at the hospital. Tracy called the docs from there at the hospital and I woke Haley up and got her dressed, then Emily, Haley and I headed up to Stanford. When we got there they were expecting us, which is nice, we don't have to wait to be seen. Tracy met up with us, and they did triage on Emily. They got a fever too, but actually not quite as high as me, but they use the highest reading anyone got, just to be sure they don't miss something. We got a isolation room in the ER and they started to do blood cultures, urine test, swabbed her sinus, and may do a chest xray but for now were going to wait. When I left the hospital at 2am they already knew her urine was negative for infection, so that's good. The children's hosptial is %100 full so for tonight Emily and Tracy are sleeping in the isolation room in the ER, tommorow morning after dischanges we will get a room for sure. They did ask if I wanted to tranfer down to Valley Med (county hosptial). Tracy used to work there and I know we don't want to get caught there over Christmas so I said no thanks. The oncologist was happy I choose that also, since Emily is being treated at Stanford, they would rather we stick it out one night in the ER. It's not comfortable but Tracy can actually go sleep in the cast room on C3 where she works if she wants so she has a bed if she wants it.

Emily' spirits are up, she feels ok except for her cold symptoms. Her very first question to me was "Daddy, does Santa come to the hosptial on Chrismas Eve?" and I said "of course he does, I am %100 sure he does. I am also going to bring her little Christmas tree from her bedroom up to her hosptial room. (it's not a live tree so it will be ok to do that). Emily and I spent a lot of the night waiting and joking around, I am so proud of how brave she is.

At this point we really don't know much other than she has a fever. I really feel like it's going to be just a virus and things will move on in their course. She is going to have to recover her levels before they let her go home, no matter what she has that is causing the fever. When I know more I will update the blog. It's time to get some sleep.

Tuesday, December 16, 2008

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.

Saturday, December 13, 2008

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.

Wednesday, December 10, 2008

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.

Sunday, December 7, 2008

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.

Thursday, December 4, 2008

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.

Wednesday, December 3, 2008

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.

Monday, December 1, 2008

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.

Wednesday, November 26, 2008

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.

Monday, November 24, 2008

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

Thursday, November 20, 2008

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.

Sunday, November 16, 2008

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.

Tuesday, November 11, 2008

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.

Monday, November 10, 2008

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!

Wednesday, November 5, 2008

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.

Sunday, November 2, 2008

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.

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

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.

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 !

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

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.

Tuesday, September 30, 2008

The plan for Wednesday

Emily is doing well. Her pulse is still high actually, when they took her vitals and labs yesterday they found she was still running high. I begged Tracy to see the doctors about this after, and they were unimpressed and probably thought it was a waste of her time. They keep saying that she looks great and that's what is important and we need to just proceed with treatment. They will start to investigate her rapid pulse if it doesn't go away soon, but there seems to be no urgency.

Tomorrow she is going to go to the hospital at 9 for labs and IV hydration. She may need a platelet transfusion, so they will first take labs. After she is hydrated, maybe around noon, she will be put under for her LP, then back to the day hospital for IV chemo. A seriously long day.

For a treat tonight Emily had some cotton candy, I think her sweet tooth is back. I have two friends at work who have a cotton candy machine, and they made some blueberry flavored cotton candy a little while and sent some home for Emily. She really enjoyed it, of course :-).

I will update tomorrow night after the chemo-a-thon.

Sunday, September 28, 2008

Emily is on an upward swing

Emily's fever seems to be completely gone, it's been almost 3 days now, and she doesn't feel the slightest bit warm. This past week shows what a roller coaster cancer can be. A week ago today we didn't have the results of the blood cultures, and we were told there was something "odd" in the x-ray. And here we are a week later, Emily is up at Grandma's baking cookies, Tracy is at work, and I am home chasing Haley. Normal stress. Like many difficult things we have gone through these past 7 months, the first time is always the toughest. If Emily gets a fever again I won't be as scared because I know what they are going to do to treat it.

Emily is even better than before this past hospitalization, the effects of the Dexamethasone have really decreased. She is much, much happier, her clothes are starting to fit again, and her appetite is returning to normal, whatever "normal" is :-).

Her treatment was changes from Tuesday to Wednesday this week. Since we know her ANC was 1100 on Friday there is a very good chance she will start reconsolidation. She needs at least 750 ANC to start the course. If she does qualify it will be a long day, being put under for an Lumbar Puncture (LP), IV Cytoxcin after she wakes up. Then she has to be on IV fluids for several hours and given IV Zofran for nausea. We will also be pushing some medcation in a syringe via IV port here at home, called Cyterabine. We are learning that we really don't know what to expect the second time she goes through these courses of therapy, but when she went through Consolidation she would get sick for 1 to 2 days following the treatment, but was feeling pretty good the rest of the week. Her ANC levels will be very low during this phase, it really knocks out the bone marrow, so she will be at risk for more hospitalizations. To guard against that we are going to do our best to keep her away from germs. That is a tough task with a wild two year old running around the house.

Saturday, September 27, 2008

Saturday, Emily is feeling great.

I have no idea what Emily's pulse is, but she feels great. I found out that with kids they wouldn't really start to intervene until they had a pulse over 200. She is acting very much like her normal self. She had a nice night of sleep. She has been doing a lot of moaning while she sleeps, but last night that was gone. She also had no fever, it's been around 36 hours since she has had a low grade fever. She is also starting to get much less puffy, the effects evil Dexamethasone seems to be really wearing off. She has been up, listening and dancing to her favorite Hannah Montana and playing her Wii. She also read me a story. Pretty much a normal Saturday. Later today since her ANC is high enough we are going to go to sushi for lunch, just Emily and me. Tracy is taking Haley for a haircut while we are gone. Tonight we are going to watch a movie at home, Emily saw part of the Princess Bride yesterday and she wants to see the end. She is still scheduled to start reconsolidation on Tuesday. I feel like we are back on track.

Friday, September 26, 2008

Friday's exam

So Emily went to the clinic and had her blood drawn. They also gave her IV fluids. The cardiologists didn't want to see her. They said since all the scans looks fine, and that the tachycardia came on with the fevers, it's probably related to a virus, or whatever Emily is still fighting. The Oncologist are really dumbfounded as to what this is though. Most likely it's a virus, and her ANC is now 1100 so really high, maybe she is just now able to really fight it and it will go away. If it doesn't, if she still has low grade fevers and rapid pulse (tachycardia), then they need to start fishing around for what it might be, for example a fungal infection in her lung, hiding out. But Dr. Link said that he thought it was really an outside chance and that for now, he would guess it's a virus. She was seen by 2 Oncologists, and her NP, and Cardiology reviewed her charts, so really there is nothing else we can do but take it easy and wait. I am going to TRY to resist taking her temp all the time, and wont ask Tracy to take her pulse that often, it only makes me nervous and there is nothing we can do.

I think back to when she was diagnosed, and Dr. Davis telling us that there would be complications along the way. I also was so focused on maintenance starting, this whole week has been really tough and demoralizing. I'm glad I had a few "Vacation" days at work to use.

noon update

Emily is at the hospital getting some IV fluids and they are doing a blood culture and check for levels of ANC. She will get IV fluids the entire time she is there. They are also going to have her seen by a cardiologist, just because of the tachycardia. The Oncologists are focused on the recurring fever, but Tracy and I want the heart to be watched too. She's had the scans on the heart but we want an actual Dr. to sign off that she's ok.

I am heading up to get Haley and work from home this afternoon.

We still don't know what is causing this

Emily still has a very rapid pulse. I've been purposely not reporting the numbers on the blog because they are scary. Her heart was in the 160's when she was admitted to the hospital. When they let her out it was 140. Last night and this morning at remained at 132. We were hoping it had slowed down but I asked Tracy to take her pulse and it's still really high. Today marks a week that her heart has been working really hard. Emily also had another low grade fever last night, with one reading above 100.4. Something is wrong, for her heart to be beating that fast and for fevers to be on and off. I can't stand not knowing what is up and have asked her to have Emily seen today. The doctors still may not be able to figure it out, but I want to make sure they know it is still going on.

Thursday, September 25, 2008

Emily is much better.

Em seems to be feeling a lot better. This morning Tracy and I noticed her breathing rate slowed down and we assume that means her pulse is lower. She also got up and was walking around and participating in the normal family activities. Much more mobile. The best news is she doesn't have a fever at all. I have taken her temp 2 or 3 times today and got in right around 98.6 each time. It's really a great sign she fought off the fever last night. It was really scary though, we got close to having to go. I called the on-call doctor, which I haven't done since March. All signs are she is getting much better.

Monday she is scheduled for labs and if she qualifies at 750 ANC on Tuesday she will have an LP and a big round of chemo to start reconsolidation.

Wednesday, September 24, 2008

still fighing a low grade fever

Emily had not had a fever for over 24 hours. We got home and she wanted to take a nap. I put her down and she wrapped up in her warm comforter. While she was asleep one of her favorite people showed up, Grandpa Steve. I left to pick up Haley at my Mom's and Steve stayed at our house. When Emily woke up she was damp with sweat. When I got home I also noticed she was warm. I took her temp and it was 100.3. The threshold for starting to matter is 100.4. So I was worried we were going to be right back in the hospital. She also started to cry a little thinking about having to go back. It's been several hours and she stayed on the border slowly working down to 100.00. I still wasn't happy to I got a wet wash cloth and rubbed her with it and had her drink some ice water. Then I waited a half hour and got a 99.6! So it looks like if we stay on top of it we can maybe keep her out. We can't give her Tylenol because it could mask a deadly infection. We can also assume her ANC is above 500, which is much better her 258 last Friday. She probably isn't neutropenic right now. But something is still up. It makes me very nervous, especially with the high pulse.

We're home but resting, at least I'm not. Tracy is at work tonight so I am home with both girls. Steve was a big help hanging out with his grand daughter, helping to put them to bed, and doing a quick shopping trip for us. Thanks Steve. Steve left around 9, so I am waiting for Tracy to come home around mid night. I should sleep, but I can't I'm worried about my girl.

Emily is home

Emily was discharged today. Her anc stayed at 500, dropping a little from yesterday but still OK to be let out today. Her pulse is still really high, but the Echogram and EKG see nothing wrong with her heart. The scary part is no one can really figure out why. Some think it is withdraw from steroids, but her main Oncologist, Dr. Link, doesn't think that's it, but he and the cardiologists really don't know why it is happening. She is also breathing rapidly. So we are at home, but not %100 by any means. Emily and I are going to watch TV and play video games this afternoon, and I will try to get her to bed early. This afternoon Grandpa Steve will be visiting and Emily is excited for it.

Tuesday, September 23, 2008

Not sure when we are going home

Emily is still feeling pretty well. She has been busy concentrating on art projects all day. She has not had a fever and they stopped the IV antibiotics. That's all great news. Her pulse is still very high and they just can't figure out why, so tomorrow she is going to have an Eccocardiogram and the EKG, just to make sure there is nothing wrong with her heart. She had to do an Ecco as a baseline before reinduction because one of her medications has a cardiac risk. They will have a baseline to compare with, we are worried that maybe the drug had an effect on her heart.

She had her chest x-ray today, and after all the worry, it turns out that her existing mass that we have known about is actually smaller. What happened was the ER docs were alarmed because they saw a mass. We warned them they were going to but they still raised alarm. It wasn't until today that Emily was able to stand up and take a deep breath and get an x-ray that was comparible to the previous x-rays. Everytime they have looked at the mass it has been smaller and smaller. It doesn't appear to be growing and their best guess is it is dead scar tissue from her tumors.

I don't know if or at what time we will get out tomorrow. If they want to do those heart tests, we probably will stay in patient until they are done, or they may release us to out patient to hang out and wait for the tests. I'd rahter keep the bed.

We no longer have a private room. We are in a room we have been in 3 times and out room mate we've had before.

Continued improvement

Emily is still continuing to do well. Her ANC was 600 this morning ! All of her blood levels see improvement. And she hasn't had a fever since last night. Her heart rate is still high, but trending down. Their best guess is the pulse rate is from steroid withdraw. They are keeping an eye on it today. Her blood cultures remain negative for infection.

Today she will get a chest x-ray to look at her mass in the chest. We hope and pray that nothing is going on there. The doctors seem pretty sure it's not bad, but until we know more, Tracy and I are nervous. They are also discontinuing the IV antibiotics today. If she goes to tomorrow morning with no fever, and her ANC stays above 500, she will be discharged tomorrow morning.

Very hopeful news all around. Once we get a chest x-ray result and news around that I will post an update.

Monday, September 22, 2008

Monday night, 72 hours into hospital stay

Emily had a really good day. We got her fever under control again this morning and she has gone all day without it returning. She spent most of her day doing art projects. She also read an entire mystery book from the library. She doesn't want to leave her room to go to school or the playroom because she has to wear a mask, which she thinks makes her look "weird". I even offered to wear one too, and she almost went for it, but I couldn't actually get her to leave the room. She is in a great mood laughing and doing her best to pass the time. A big improvement today over previous days.

Tracy and I are doing are best juggling the hospital and taking care of Haley. Tracy is also going to work Wednesday, which will be interesting. Tracy will be working and Emily and I will be in patient rooms, we hope Tracy can make it by on her shift. Actually I hope we are at home. I may work from the hospital on Wednesday. I am lucky to have a job that can be done remotely from time to time.

Unless things take a change for the worse, it seems like we are just waiting for ANC to get over 500 for a steady period, and for the fever to be gone and to stay away without any Tylenol. By the way if you are wondering why they aren't giving mortin for fever, which would be more effective, it's a chemo thing, they don't like to thin the blood at all which aspirin and it's derivatives (ibuprofen) cause.

More clarity, reasons to be hopeful

Emily was able to kick her fever with one dose of Tylenol and Codeine. That is wonderful news.

The Oncologists came for their morning rounds and were very positive about Emily latest lab results. Her ANC fell back to 300 which is not in the right direction, but they see an elevation in the lymphocites and other white blood cells that they usually see as a precursor for neutrofil counts rising. Her hemoglobin is also high enough to be considered normal so for now no more tranfusions.

The best news is that nothing has grown so far in the blood or urine cultures. What this means is this is probably a virus and not an infection. She will continue to get IV antibiotics though, until she can kick her fever without Tylenol and her ANC levels are above 500.

Tracy and I feel very encouraged with this news. Emily is also feeling well, with little or no leg pain, and has continued to have a healthy appetite through this. I just went on a run to the Menlo Park Safeway for a 5 pack of Corn Dogs :-) She won't eat hospital food so we are having to either make it at home or shop for her cravings.

Monday morning

Emily's fever and high pulse rate came back over the night. This was about 18 hours after her Tylenol dose, so it was probably masking the fever and helping with her pain. She was able to take some more over night, and Tracy said she feels cool this morning. She is still sleeping because she couldn't fall asleep until 130am. She isn't feeling well. I am going to go sit with her today while Tracy comes home and sleeps while Haley naps. I will update more after the docs come on their morning rounds.

Sunday, September 21, 2008

Finally some numbers in our favor

Emily is doing better and we are starting to have more of an idea of the things causing her symptoms. Her pulse has slowed after her transfusion, she was very anemic and that seems to have made things better. Her temp is 36.6 (which is normal) and has been for 16 hours or so. She is not taking any tylenol per the Doctors order to see if she really doesn't have a fever or if the Tylenol was masking it. But she hasn't had Tylenol or Codeine since 6am and no fever ! They are fairly certain that the leg pain is from withdraw from Dexamethasone, or favorite chemo drug that keeps on giving. She is neutropenic because it is 13 days after her last dose of Doxerubicin and day 14 you expect to see it at full effect, so that explains why she is neutropenic. She was admitted with an ANC in the 250's, and at her last blood draw Tracy calulates it in the low 400's. Emily would need to be at least 500 to be allowed to leave the hospital, we stay until that happens. Also note, Tracy is not an Oncology nurse and calculating ANC is not trivial, so that number may change, once we see an actual Oncologist. (just kidding they are very accessable to us, we just don't need to know so we are waiting.) She also had a slight improvement in White blood cells, which means her marrow is at least doing something.

All in all the symptoms are explained at least. Tomorrow we should get results of the blood and urine cultures from the ER visit to see what exactly this infection is, and if we can treat it with a more appropriate antibiotic. Right now she is on a kill all antibiotic and it's most likely working, it seems to be from these lab results.

We aren't in the clear, but have a better idea of whats up here.

Emily is feeling OK, super depresed about being back in the hospital, but she remains her positive self dealing with this like a real champ. Let's all hope her ANC spikes up soon.

Sunday AM

Last night was a long night, but by the time I left this morning Emily was feeling a little better. Partly from the codeine and partly from her blood transfusion from last night. The transfusion did bring her pulse down which also let her relax more and get a good night of sleep. She hasn't had a fever for probably 11 hours or so, which is great. I spoke with one of the Oncologists this morning and they are starting to think the leg pain is not from Vinchristine, but might be from the fever and infection she is fighting.

Tracy will be with Emily today while I try to get some sleep. I am working on 4 hours of sleep since Friday morning.

midnight update

Emily is still having a really tough time. They couldn't get her pulse to drop for the past 20 hours, even giving her bolice IV fluids. About 3 hours ago they decided they needed to give her a transfusion and that seems to have helped, her pulse in finally falling a bit, but it needs to go lower.

She has had a fever on and off all day. Earlier I had reported that we had broken the fever, but it soon came back. Right now she doesn't have one, and let's hope it stays that way.

She is also suffering from really bad leg pain as a side effect from the Vinchristine. She is on and off in extreme pain.

I haven't seen Emily so down in her treatment. Tonight she just cried and cried that she was sick of this and just wanted to be in her own bed. It made me start to cry to hear her say it, and to see how sad she is.

She can technically have visitors but we ask that you check with Tracy and I first, we are going to really limit her exposure for a while here now.

Saturday, September 20, 2008

Another update

They got the results of the second chest x-ray. The good news is they have totally ruled out pneumonia which the ER thought they saw. The bad or scary news is the mass that Emily has had in her chest all these months has changed, and they don't really know why. Dr Link is thinking it is because she was not able to take a deep breath for the x-ray and that is making the mass appear larger, but until he can verify that it is a concern to follow up on. He said if she were relapsing or if this were progressing to Leukemia he would have seen other signs in her x-ray and blood levels. I can tell though, that they are worried about this.

Right now I am here with Emily in her room, she is sleeping. When she is awake I can tell she is scared by how quiet she is being.

Her last temp read 98.8 so the fever is getting under control, though it seems to stay there and then bounce up from time to time. She is getting very strong IV antibiotics every 8 hours, the next dose is due around 5pm. I hope that after they have her on this for 24 hours we don't see any more elevated heart rate or fever spikes.

In 2 or 3 days they will do another x ray to see what's up with this mass. That part worries Tracy and I very much. that mass has always been something we haven't felt comfortable with.

Update on Emily's condition

Emily is in a private room at Packard hospital. She isn't feeling great but her condition has improved. Her fever is on and off, it just came back after being gone a while. They are not monitoring her heart but I assume the rate is still elevated. There is a questionable spot on her chest x ray that they are following up on. In the ER they were worried, but Dr. Link doesnt think it is something he is too concerned about.

We asked how long she will be in here and his best guess was 5 to 7 days, but it really all depends on her ANC getting above 500 and her blood culture results.

On the postive front she still has a healthy appetite, I made her some rice at home this morning and brought it in, she ate two plates full. I also stopped and got her a creme filled doughnut which she devoured immediately.

Tracy and I are very concerned but not as scared as we were last night. This is just part of treatment. Dr. Link and ALL the doctors we have spoken with are amazed that this is our first hospitalization due to neutropenia, it just happens and %70 of the time it goes unexplained.

I will update later today if there are developements, for now I feel like they have her stabelized. We just all hope her fever stays away and the antibiotics continue to be effective.

Complication, Emily has been hospitalized

Tonight everything seemed great. Emily was having a little pain while walking from the Vinchristine. It was also Tracy and my 10th, which we celebrated last night, but went out with the kids for dinner to celebrate as a family. We had a fun time.

When we got home Emily got ready for bed, and about 30 minutes after going to bed, she came out of her room to tell me she agreed with my decision not to give her a snack. I thought it was a new angle on getting food, reverse psychology or something. I patted her on the head and noticed she was warm. I took her temp and is was 102, which is above the danger level, she needs to be at an ER within 30 minutes of that reading. I woke Tracy up, she took her temp and got 101.5, still above the threshold.

We called the Oncology after hours number and they had the ER at Stanford prepared for our arrival. Tracy took Emily up while I waited for my Mom to come over to be here with Haley. Emily and Tracy got there and her heart rate was really high about 160 per minute, and she has a fever. They took her blood and she is neutropenic, meaning she doesn't have the natural ability to fight whatever she has. They started IV fluids to get her heart rate down and she is on a high dose antibiotic. She will be admitted to Packard tonight and will be there until this is all under control. We are really scared but this does happen in treatment and all we can do is be glad we happpen to catch this early tonight while she is still feeling relatively OK, and that we are treating is as I write this.

It will be several days for the blood culture to tell us exactly what infection she has, but for now she is being treated for general sepsis. I have the feeling she could be in patient a while.

Please keep Emily in your thoughts and prayers this weekend. This is a complication that is very serious.

Wednesday, September 17, 2008

Last dose of Dex

Tonight around 8 I will be giving Emily her last dose of Dexamethasone. Tracy will be at work, and I am sure we will call to tell her that we are done. Emily is excited to have this complete. It will also be the last dose of all the medications that are part of reinduction, so she's done with that part of the phase !

Yesterday she had her last done of IV Vinchristine in reinduction. She will continue to have Vinchristine once a month during maintenance, but that won't be for a few weeks. Vinchristine makes her tummy really unsettled and we dealth with that last night, but this morning she was not showing any of the effects.

Yesterday they also talked to us much more about the maintenance plan. First off the start date is October 21st ! that was nice to hear. Then some news that Emily is struggling with, but I am sure she will learn to deal with. They want to remove her port ASAP, which is going to mean she will need to have finger sticks weekly to draw blood, and will have to be accessed peripherally in a vein for the monthly IV. Baiscally a lot more pokes that she would like. I also worry that if complications happen we would have to have a PICC line again, which I think was the main catalyst for the blood clot. However, I know the doctors understand the benefits and risks of keeping a port in, and if they want it out, I fully support that decision. Emily is also going to have to take daily methotrexate along with 6MP, both in pill form. Other than daily pills and blood checks, we hope Emily's life will return to much the same way it was before March of this year.

Reconsolidation will start on Sept 23rd. It will be a long day, she will need to be put under for a LP Methotrexate therapy, and then several medications via IV port. She will likely throw up after these treatments, as she did in phase 2.

Hopefully Emily will be feeling better this weekend and we can get back out there and have some fun.

Monday, September 15, 2008

Almost done with the first half of phase 4

Phase 4 of Emily's chemotherapy is split into two parts; reinduction and then reconsolidation. This weeks marks the end of the reinduction portion of the phase. It's a bit confusing because each were a separate phase earlier but are rolled into one phase at the end. Today Emily went into the clinic to have her labs drawn so that hopefully tomorrow will go faster, without as much waiting for lab results before chemo can be administered. Emily is scheduled to get IV Vinchristine tomorrow, that is the last of the medication for reinduction. She is also on the last step of her Dexamethazone treatment and will be completely off of it this Wednesday.

Reconsolidation is scheduled to start on Sept. 23rd, but the start date is really blood count dependent so that's just the best guess we have. Reconsolidation will include among other things, 2 lumbar punctures, and IV Cyterabine, and Cytoxin. She will also be on daily oral 6MP medication. There are at least 2 other medications involved but I am writing this without her protocol in front of me and I can't remember the details.

Emily is still having a hard time, pretty much like what I described in my past post. Daily we can see an improvement in her affect but she is still not back to herself. And the food cravings continue to be out of control. Over the weekend she ate so much food, and stuffed herself so much that she had abominal pain for a good 12 hours after coming home. She is very insistent on getting the food she wants and I think it's harder for my Mom to say "no" than it is for us. Luckily we're near the end of the high dose Dexamethazone, it is the toughest medication Emily has had to take in chemo, in my opinion.

We hope Emily will feel like going back to school soon. I was hoping it would be this week, but I have my doubts at this point, right now she does not fit into any of her clothes and she is so puffy, I think she might have a hard time in front of other kids, and the last thing I want is for her to feel bad about the way she looks. I am sure she already does and doesn't need it to be called out.

As I write this post I am sitting here looking at Emily's first grade photo, back when she was very healthy. It's hard to see her change so much, to see her go through all this pain. I do try to take things a day at a time, but right now it's easier for me to think ahead 6 weeks and that she will be done with the hard part of chemo.

Saturday, September 13, 2008

Another weekend

This weekend we are taking it pretty easy again. The big event actually is my 20th high school reunion tonight in Portola Valley at the Priory. Tracy and I are going and leaving the girls at my Mom's house.

Emily is still having a really hard time. The taper has helped with some of the depression, but her appetite has maybe increased as we taper. All Emily wants to do is eat. Yesterday I took her out for Japanese food at lunch, which right now is one of her big cravings. She ate a bowl of rice, a bowl of miso soup, and some edamame, then a bowl of green tea ice cream. Emily commented that she was "stuffed". I then met Tracy back at my office, so I could go back to work and she could take Emily home, and as soon as I was gone, Emily was begging Tracy for a cheeseburger. Then when they got home she ate several more bowls of rice, and so on and so on. We finally told her last night that she couldnt' have more to eat, and she burst into tears. We gave in and gave her some chicken broth, then she wanted bananas with peanut butter, and then bed. This morning she woke up and ate 2 bowls of rice and an egg with toast, and right now is begging me to go to Starbucks for hot cocoa. It doesn't stop. She doesn't fit into her clothes, and has a major struggle walking up two stairs from our family room to dining room.

We still have 4 more days until she will be totally tapered from Dex, and then these cravings will get smaller over time. I am glad we have been through steroids before in the beginning of treatment, I know these effects are temporary. It makes it much easier to deal with.

On Tuesday Emily will be getting IV Vinchristine to finish out re-induction. Then it's onto 5 weeks of reconsolidation, then maintenance.

Thursday, September 11, 2008

Hard times

I was really hoping that the initial taper would have made Emily feel much better. She has perked up a bit, but is still really uncomfortable. She is still getting larger, like there is a lagging effect of the full dose. Right now she can't fit into her normal sized clothes.

When I got home from work tonight, my Mom was here watching the girls. She told me Emily felt a little hot. I took her temp and it is 99.5. I have taken it many times in the past hour and a half and it is consistently at 99.5. So she has a slight fever, which is a concern, but it would need to be 100.2 for over an hour for us to have to bring her into the ER. Hopefully it's just a minor fever and nothing to worry about. In an hour I am going to take it again and see where it is.

Tomorrow she tapers to a even lower dose of Dexamethazone, and I hope that she perks up even more.


UPDATE It is now about an hour after I originally posted, Emily's temp has returned to the 98 range. There is no worry this time, probably never was, just a nervous Dad. Tracy is at work tonight and I think I got myself worked up :)