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Emily is continues to be doing great with her treatment, and is getting to have a lot of fun. This week our friend Kim called and offered us their tickets to the San Jose Sharks game. Emily had been to a game with me earlier in the season, and she was excited about going to another one. This time though, she wanted Tracy so that's what we did. I watched the game from home so I would be able to talk about it with her. She likes hockey, the games are really fun to go to. San Jose has the best record in the NHL this year. Every year the Sharks sell their season out, and there is so much energy at the games you really are lifted by it, it's quite an experience. Kim also loaned Emily a Sharks jersey to wear to the game, which you can see in the photo above.
On Thursday night I forgot to give Emily her chemo, and Thursdays are 6MP and Methotrexate day, so it was a big miss, but luckily we realized at 5am when Tracy got up with Haley so we were able to give her the dose and not have an effect on the week. We do our best to set alarms on our phones and calendar software but it's so easy to forget even something that important. When I went to bed I remember thinking I needed to give her the pills but was distracted and forgot. Its the first mistake in well over 6 months, which is the good news, normally we've been on time for everything.
Emily's pill schedule. I mention pills but here is the drill. I am going to mention the number of pills not the dosage, just to give an idea of the quantity of pills. On Monday - Friday she takes 1.5 6MP pills 2 hours after eating dinner. On Thursdays she take 7.5 Methotrexate pills. On Saturday and Sunday she take 1 6MP pill, and 2 pills of Bactrim per day. Every 4 weeks she also adds Prednisone to the cocktail for 5 days, taking 4 pills 3 times a day. That repeats itself over and over until she is done with treatment. She also gets 1 IV medication once a month, on the same week she takes the Prednisone. I often think of it as a cocktail treatment like you hear of patients living with HIV.
Emily has a little cold still but overall seems to be healthy. She will have her labs this coming week and that's all we expect to have to do medically.
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6 comments:
Only one mistake in 6 months is an amazingly good record. Even the brightest, most motivated parents are going to slip up a little and I am so glad you realize that. If I didn't use a couple of those 7 day pill organizers from the Dollar Store, I know every now and then I would forget to take pills or not remember I did take them. Emily's good spirits in dealing with taking all that stuff is most impressive. The fact that she is also fitting in school and lots of fun is a testament to your good parenting.
Celia
It is miraculous that you have not had a few more misses in the past. It is a lot to remember and I know how busy you all are. Keeping this schedule going is part of the reason why Emily is doing so well. She has devoted parents who love her.
Love, Grannie
What an amazing job you and Tracey do keeping all of Emily's medications straight. You also have to take some of the credit for Emily's continued success. You are obviously loving devoted parents and everyone makes a mistake or gets off track now and then. What an awesome picture of Emily at the Sharks Game....I'm sure she and Tracey had a great time. It looks to be another wonderful sunny day - I hope you have a wonderful Sunday.
Cathy Breit
Hi Chris, Tracy and Emily! Aloha! It’s Lauren. I hope all of you are doing well! I just read your latest blog postabout Emily and I’m glad she’s doing well despite the small cold. That game sounds like fun! I setn you an e-mail reply to the one you sent me, but I wasn’t sure if you got it or not.
Like I said in the e-mail, I recently changed my e-mail address because yahoo was giving me problems. My new e-mail address is: littleangelhorselover89@yahoo.com
You can e-mail me there from now on.
In re: to your reply to the first comment I left on Em’s blog, Your e-mail touched me deeply. I’m glad my comment did the same for you and your Ohana. I live in Pennsylvania. As for the book I wrote, I hope you and your family enjoy it when you get it. A lot of other people who read it said they couldn’t put it down. I like it a lot too, but I prefer my second completed book, An Angel Named Kasie better. And in case you’re wondering, I changed the title of it from Kasie’s Gift to An Angel Named Kasie. And as for my feelings towards my second book versus my first one, you know what they say when it comes to any form of art. You are your worst critic. LOL!
I think I found Emily’s blog through google.com. I hope this doesn’t come out the wrong way, but I was surfing the net and I came upon it while looking for something to read. But once I started reading it, I couldn’t stop. I had the feeling God had led me to it. And I’m glad He did. I meant what I said before about Emily being a true inspiration to me.
I didn’t mind sharing my story with you guys. I never mind sharing it with others. I do it in hopes that it will help others know they aren’t alone and give them the strength and courage to not give up. I also enjoy helping people-whether it be family, friends or people God has brought into my life, like He did with Emily and your family. I’m the happiest when I’m helping someone or brightening their day. I get the most joy out of life when I can make someone smile or just be there for them and help them have a better day.
I also thought it would be fun for me to tell you some of the things I’m into. As you’ll soon find out, I’m a kid at heart and proud of it!
My favorite movie above any other is Disney’s “The Little Mermaid”! I’ve loved the movie ever since I first saw it back when I was six years old. Ariel is my first favorite princess and she holds a very special place in my heart. I also love Lilo and Stitch, Tinkerbell, The Aristocats, Aladdin (Jasmine is my second favorite princess), Oliver and Company, 101 Dalmatians, Jungle Book 2 and Lion King II: Simba’s Pride. I love listening to Disney music as well. I also love Disney’s Adventures in Wonderland, Adventures in Odyssey and reading books by author Jean Little. Reading is one thing I love doing.
Speaking of Disney songs, I have several from various movies and TV Series that I would be more than happy to share with the girls.
I know how boring it can be when you’re in the hospital and there’s nothing to do. I know from reading the blog that the hospital you guys use has a playroom and that, but I figured Emily might like some songs to listen to at night or during the times the playroom isn’t open right away when she has treatment. Feel free to let me know what Disney characters she likes and I’ll see what I have to share with her. Haley is also welcome to listen to these songs as well!
I hope we can keep in touch as well!
Tell Emily I said hi and I’m praying for her.
Also, in case Tracy gets this and not you, Chris, I’m glad you were touched by my comment as well!
May God richly bless you and your family
Aloha for now
I hope to hear from you soon, but take your time
Lauren
Hey Emily,
Just wanted to let you know how happy I was to see you today at Country Lane...you give the best hugs ever....stay happy by dear sweet girl....
Love,
Mrs. Breit
Dear Emily,
Thank you for the hugs today!! I love the picture of you at the Sharks game! Did you have a fun time? I always enjoy the energy there. I hope to see you dance real soon. That will be such a treat.
Love and hugs,
Mrs. Smith :)
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