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 !
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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!
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.
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.
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
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.
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.
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!
This weekend we plan to go camping at Portola State Park. And next week is Emily's 7th birthday!
Subscribe to:
Comments (Atom)
Posts
