Wednesday, April 30, 2008

Emily had her weekly exam today. It was a very quick trip to the clinic, gave some labs, and went home. Emily is doing really well. She has much less body pain overall, and she is walking mostly on her own now. Her appetite has gone to near zero. Right now a calorie is a calorie so she can have pretty much anything she wants, but nothing sounds good to her, especially the things she craved just 2 weeks ago. Her Doctor says she is doing really well, he even muttered, "she's becoming like the model patient". That was exciting to hear. I talked for a while with Dr. Link last week and he reiterated something we were told the day Emily was diagnosed, he wouldn't sugar coat anything. So when he says she is doing great, it means great. Last week I was trying to get him to admit that there must be at least something that didnt seem right in her scans, and he told me, "If she were not doing well I'd tell you, she's looking really good."

What's coming up? Even though Emily is doing well, it's very likely that she'll be back as an in patient in the hospital in the next few weeks. In phase 2 the drugs almost completely suppress the bone marrow, and as a result she won't have much of an immune system. Dr. Link has told us twice that we should have a bag packed and that 10 to 14 days after the first Phase 2 dose, we should expect a hospitalization. We are on day 8 now. The likely symptom will be a fever. When and if that happens we call ahead and head to the hospital to check in. So don't be shocked that after all these good days that you'll read that Emily is back in the hospital. It's almost a given. Today she was getting close to being neutropenic.

Next week she is scheduled to have another lumbar puncture and an all day chemo, but it will be dependent on her blood levels, and many patients have to delay a week before they receive the second dose of phase 2 chemo. And IF she ends up in the hospital I don't know how that will impact the next dose. They want to let her recover from the dose she is on now before she gets the next one.

Emily is going to try to go to school as much as possible. As much as we can we are going to get out and take advantage of Emily being more mobile and excited to do things.

10 comments:

Anonymous said...

Emily I am so proud of you and happy to hear that your doctors think you are doing so well. I love to see you when you come by school and hope to see you again sometime this week. Mrs. Smith will be able to come to your home to work with you when you need to stay at home and I will remember to send stickers with her. We all love you and miss you and keep thinking positive and happy thoughts for you. Looking forward to seeing you soon.

Anonymous said...

Emily,

It was so great to see you these last 2 days and spend a few minutes talking together. You helped me understand better how you have been feeling lately and how your treatment has been happening. You smiled a lot and we laughed together.

Tomorrow I'm going to see Logan and we are camping in the desert with his Dad and my brother Mark. When you get better we can plan a camping trip with you. Ok, I have to pack.

I'll bet that kiss on your shoulder is still there.

Love you,
Grampa

Anonymous said...

Dear Tracy & Chris -
It was so good to see you, Haley & Emily yesterday and today. Emily and I were able to spend a chunk of time yesterday one-on-one reading books and just talking. I can see first hand what an emotional roller coaster you two are riding -- making sure Emily has the proper medication and shots that she dreads taking; getting her ready to go to the doctor for labs when she does not want to go; trying to feed a child who is hungry, but to whom nothing sounds good. Then today, Emily was able to eat some things she had not been able to enjoy for some time. Emily was also well enough to suggest we go for a bit of shopping on our way home. If the doctor says we can expect Emily to need hospitalization in the next week or so, I need to savor my memories of every fun moment she and I have shared. I will see you all next week. Take care.
Love, Grannie

Three Paper Pigs aka Twin Soul Art Studio said...

Hello Buggers,

I saw Em briefly yesterday in class and have to say she looks really healthy and I was amazed to hear Tracy mention that she's been walking a lot more and regaining physical strength over the past few days. At the end of the day, before Caitlyn went to bed, she said, "It sure was great to see my buddy Emily, in school today!" This was followed by her usual prayer for Emily to get healthy again.

I'm also really glad to hear you guys were able to spend time away from home and reconnect as a family. That is so important.

Love,
Jeanne & Caitlyn

Anonymous said...

I'm so glad to hear everything is going to well...or at least as close to perfect as it can, considering. It's awesome that you got out for a special family SFO weekend. Talk about a highlight. I'm sure you all (well, maybe not Haley) will always remember that. I'll be sure to check in with you in the next few days. We're right next door to Stanford, so I'm happy to help. (We will be gone over the weekend, but back starting on Monday.)
Sending hugs and good thoughts,
Lyn, Mike, Sophia, & Trevor

Emma said...

We love the picture of you in SF. We are glad to hear that Emily is doing so great at destroying the cancer, we know it is still a huge struggle to get through all the treatments you still face. We continue to be amazed by her and hope that the rest of the week goes well and that if she does have to go back into the hospital it will be a short stay. Sending much love.

Jane Izumi Matsumoto said...

Reading about your visit to SF was so much fun. I was born and raised up there and get nostalgic since I don't get to visit as often as I would like to, even though it's just an hour away. I hope the rest of this week is going well. If you need a place for Haley to hang out while you rush off to the hospital, you can always give me a call and see if we are around. As always, thinking of you all and sending lots of hugs! Jane

Anonymous said...

Hi guys,
Glad to hear that Emily continues to do well. We had our fair share of fever and neutropenia...those unexpected visits to the hospital do pop up. Good idea to have a bag packed...I never seemed to be ready when it happed. She might be one of the lucky ones that hardly ever gets a fever...hopefully! Glad to hear she still wants to attend school and that she is feeling up to it. You are all doing a great job with all these challanges.
Theresa

Anonymous said...

Hi guys,
Glad to hear that Emily continues to do well. We had our fair share of fever and neutropenia...those unexpected visits to the hospital do pop up. Good idea to have a bag packed...I never seemed to be ready when it happed. She might be one of the lucky ones that hardly ever gets a fever...hopefully! Glad to hear she still wants to attend school and that she is feeling up to it. You are all doing a great job with all these challanges.
Theresa

Kim said...

Thanks for sharing the good news about Em's progress and for posting the great photo from the SF Zoo--I like how Em is leaning forward with a smile.

Love,
Kim