Some additional details from Deb:
As Cat noticed, Lizzy's results came back ALL, which is the easier of the 2 kinds of leukemia to treat...except "easy" is not the right adjective... More on that in a bit...There are 3 indicators of high risk ALL:
1) Age - Anyone less than 1yr. and over 10 yrs. is in the high risk catagory. Liz is 14, so that does make her in the higher risk. The doctor explained though, that this means given the same treatment as a 1st-10yr. old, the risk is higher, but with more intensive treatment for Lizzy's age group, the results are the same. So, this is not a major concern b/c she will be recieving the more intensive treatment.
2) If her blood counts were way high on admission, she would be in a high risk catagory. They were not over the limit, so this did not apply.
3) There is a "genetic marker" that, if it is postiive, will put Lizzy in the high end of high...regarding risk of relapse. The results of that marker will be back in 2-3 days. The induction on chemo is the same whether the marker is present or not, so they will begin chemo in the morning. However, if the marker is present, it will present the need for more intense treatment, and Lizzy will be at an incresed risk for relapse.
Christine said, a few times, that she is afraid people will forget to pray. Specifically, she is asking for prayer that Liz does not have the genetic marker...If you have a chance, please email her and let her know you ARE praying that the marker will not be present.
As Cat mentioned, the Lothrups have decided that they will consent to a clinical trial. The trial is NOT a blind study, and puts Liz at no risk. It is a comparison of 2 treatments, both of which have the same positive effect in treating ALL. The research is doing a side by side comparision of the side of effects of each treatment. It is a national study over 3-4 years with the intent to study close to 2500 patients. Children's hospital will likely have 2-3 hundred patients involved.The main difference in the 2 courses of treatment is that one course is done in the out patient clinic every 10 days or so, and one is done on an inpatient basis for 2-3 days every 4 weeks. Randy and Christine will have a 2 hour meeting with the doctor tomorrow to get their questoins answered.
The doctor noted that ALL is rare, and there are about 2,000 cases per year that are diagnosed....(seems like a lot to me...) He is a very sincere doctor who offers his time and sincerity. When he told Randy and Christine that ALL is rare, he quickly noted that this fact is not even relevent for them, since their daughter has been diagnosed. The course of treatment, given either option is about 2 1/2 years. The phases are outlined and the days numbered. For instance: Phase One lists the 1st month of treatment on a day by day basis. It details what meds Liz will be getting and when, and if they are by mouth, IV IM etc...
The common side effects are many: nauseu, vomiting, mouth ulcers, potential hair loss, etc.... These side effect are about 20% likely. There are other, more difficult, side effects that have a 10% likelyhood, and even a third, worst cataegory that has a 1-3% likelyhood. It is going to be a very rough road, and Liz will have many days of feeling absolutley awful. There will likely be many long days, and even longer nights. There is nothing easy about this treatment.
As noted already, get a flu shot (not the nasal aerosol) if you think you may be visiting in the future. DO NOT visit if you have even the smallest thougth that you may be sick, and be sure to wash your hands.
All it all it was a very hard, long day with the procedures and the decisions that need to be made. Christine said she is feeling better though, just having some kind of direction to go in. (Although she is holder her breath waiting, and praying for the results of the 3rd marker). Lizzy seemed tired, but in good spirits...eating mac and cheese, french fries and gator aid....= ) Chemo begins in the afternoon...PRAY!
Tuesday, October 28, 2008
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18 comments:
Christine / Randy
Following Cat's post -
We are praying that Liz does not have the genetic marker...We are letting you know that we are praying that the marker will not be present.
Dear Lord: Hear our Prayer.
Coach K and Steedly
Dear Lothrop Family -
Our thoughts and prayers are with you during this difficult time. We continue to pray for good results on the next testing and minimal side effects for the treatments. You are all so dear to us! We KNOW God will get you all through this!
With much love,
Wendy, Steve and the kids
We're praying Liz does not have the marker also. That was the last thing I did last night when Cat told me about it.
I'll try to get the word out to as many kids as possible regarding visiting. There are tons of them who want to be there with her.
Praying for Lizzie and your entire family, Randy. Love you guys!
Stan
Hi Lizzie,
To our favorite beautiful Mason gal pal!! You are in our thoughts and prayers especially for a negative sign of the genetic marker. We love you and hope we get to see you soon!! I know you have the faith that will get you through all of this. Love~~Tracy Steve Dylan and Ty-Ty Carnes
Liz you are so strong and have so much determination. I have faith that all your tests today will be good and what you all want to hear. Please know that our prayers for you are strong and will never stop, we pray for you day and night there isn't a moment that goes by that we don't think of you. You are so dear to our family and so many people and everyone who knows you have a love for you...Please know that you are not alone God is with you and you have the Holy Ghost with arms around you like a blanket hugging you tight...
I am going today to get a flu shot and I hate needles but I will do it for you...so that when I can I will come and see you and bring you a People so you can catch up on some fun news (gossip)...so girlfiend hang tough and keep on smiling you can knock this desease to the ground...much love and great big hugs.
Mrs. Jones
Hey family its Kristi again...at this time I am listening to ReliantK (For the moment I feel faint) and I am thinking of you all and praying for you...just remember what the song says, "Never underestimate my Jesus,when the world around you crumbles YOU WILL BE STRONG!"
I know you will be and when you get down we will all lift you up...much Love stay strong!
Kristi
Hi Liz.
It's Chelsea Vires. Brieh Walker just told me about you. I haven't talked to you in a long time, but after getting the news I wanted to talk to you again. We all hope you get better. I know you're stong and I know you're able to get through this. :) We believe in you.
God will get you through this.
Love,
Chelsea.
Hey Liz,
I thought about you all day at school. I told my friend Abby, (Andrew Hausers little sister) about you and she is thinking and praying for you too. I am sorry I can't come to see you but I look at you everyday on my moms phone. I love you and I know you will be strong and fight this.
Love your little sis...Annie
Hi Liz,
Hope you had a "reasonably" good day today with everything going on. You are in our thoughts & prayers always...but I'll especially rub my rosary raw now!
Love you much goddaughter. You can beat this, stay strong....we're with you all the way.
Love you kiddo,
Aunt Laura
Hi Liz
My name is Mr DeJoy and your dad taught me how to play and coach basketball. I just wanted to let you know that my family is praying for both you and your family. Take care of yourself and remember you have the strength for everything through Christ who empowers you. Phil 4:13.
Hey Liz! Wassup girl? Hey i'm really sorry about all this! im praying for you dude. listen my names courtney and im 13. im jim dejoys daughter. and if your ever boered feel free to email me at courtney156@gmail.com. Rock on girl! you can beat this!
Hey Lothrop Family,
Elizabeth, You might not remember us, but we are your old neighbors from Mulberry St. We remember you as this cute little baby girl. Now, in your pictures we can tell you definately grew up into a beautiful girl. We are praying for you and for your family. We know you are strong and will make it through this. You'll be back playing sports in no time. We can tell from your pictures that you have a lot of love and support from your family and friends. We will continue to think about you and pray for you!
The Brown Family
get well!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!lizzie i love you and GOOD LUCK!!!!!!!!!!!!!!FROM JUSTIN!
Hi Liz,
We are keeping positive thoughts for you tomorrow Lizzie. We love you so very much!
God Bless
Aunt Cecy, Uncle Gene, Patrick, Justin and Mako
Hey Liz! its anna! I just want you to know that im always thinking about you and you are in my prayers. When i got to see you yesterday the first thing that i thought is how could she be so happy? you were all smiles the whole time and you were laughing and you looked so pretty! idk how you do it. liz, you have definatly been an inspiration to me and many others. keep being strong and ill be thinking about you all the time i promise! i cant wait till i get to see you again! when i can we'll like have a movie day or something and play coke or pepsi:) i love you a ton and dont you ever forget it! btw make sure you tell me if you are running low on coloring books! ill get u a pooh bear one! those are the best! <3 anna*
Hi guys! We are so glad to follow your blog and know how prayers are being answered! We will continue to pray specifically each day! Love in Him, The Heydts
hey Liz,
We are all prayin for you at school and at home.We all have gotten orange shirts to support you through your hard times.
with much love,
veronica mitchell
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