Monday, January 26, 2009

Gearing up for Interim Phase I

We are now deep in the trenches of learning what is coming next for Elizabeth as we head into the third phase. Like I said, "we live in a world of phases right now."

Each of her phases last 57 days. Elizabeth has four more phases (this phase is included in that count) before we hit the maintenance phase which is a five week cycle consisting of 87 days per cycle. To break it down and use math, which I am NOT good at, we have 228 more days before we hit maintenance and once in maintenance we have 435 days which brings our grand total of days before she no longer has to take any pills and is bustin out of Children's...... 663! You can also see why I am very cautious when her counts are down and that no one even thinking they are sick come to visit. It is already such a very long time for treatment and any delay just adds to that 663 days.

I am really not that anal of a person that I actually count out days like this but a lot of people were not understanding how long this protocol or treatment is and pretty much thought she is out and not understanding that she is NOT out, not for a long time. I hope every one has longevity for their prayer life because this is a long journey but one we will celebrate with great joy at every prayer answered.

On to information about the Interim Phase I.

It actually starts tomorrow if you count the GFR test. Glomerular filtration rate (GFR) which is a measurement of the amount of glomerular filtrate (a substance similar to blood plasma but without proteins) formed in the kidneys each minute. It is used to evaluate the kidneys’ ability to remove waste products from the body.

The GRF and checking for persistent protein in the urine (proteinuria) are believed to be the best way to diagnose early kidney damage. This is extremely important because the high dose Methotrexate is damaging to the Kidney and can cause Renal (Kidney) failure. Elizabeth has been receiving a smaller dose of Methotrexate in her spin since the beginning of her protocol but this is an extreme high dose.

If Elizabeth's counts are in order, platelets 75,000 and ANC 750, she will officially start her Interim Phase I on Feb. 3. This phase will be a four day hospital stay with 10 days out and will continue with this cycle for the duration of her 57 days. She will be receiving a high dose of Methotrexate. This chemo will be given through an IV and will take 24 hours to receive. On day 29 of this phase, her platelets need to be at 75,000 and ANC of 750 to continue on through the phase. If they are not up to those numbers, she will wait until they reach the numbers and then continue on through the phase; hence a potential delay.

With this chemo drug, she will need a new drug called Leucovorin (LOO-koh-VOR-in) which is an active ingredient in a drug used to reduce the toxic effects of folic acid antagonists (substances that block the action of folic acid), especially the anticancer drug methotrexate. It is also used to treat anemia. Leucovorin is a form of folic acid, a B-complex vitamin that the body needs to make red blood cells and to function and stay healthy. Leucovorin is a type of chemoprotective agent and a type of chemosensitizing agent. She will receive a series of shots through her IV starting 48 hours after her high dose Methotrexate.

If I thought that the ARAc was tough on her counts, WBC,RBC,Platelets, and ANC, I think I have a new thought coming towards this Methotrexate. I believe this one will be the winner for complications. I must admit, I have held off on this update because I am scared of it; I am scared of what this phase will hold for Elizabeth. I feel it will be one the most visual for people and for Elizabeth. I pray I am wrong like I normally am. :-) Now you know why I do not read ahead. I let God lead me one day at a time...no I stand corrected....one minute at a time. He lights my way and I could not survive without him or in any other way.

Elizabeth will still be on the chemo drugs Vincristine (a 15 minute IV drip,) Mercaptopurine (6MP pill given at home,) and the IT MTX (interthecal methotrexate or spinal.) She will have the IT MTX procedure on day one and day 29 of this phase. LIz will also have a bone marrow biopsy on day 1, Feb 3 (hopefully). This will be to check her remission level.

Here are some specific to pray for:
That her remission level, amount of leukemic cells in the bone marrow, is lower than her .02% at the end of November.

that side effects are minimal:
nausea, emesis (vomiting),mouth sores, renal failure, hair loss, extreme low counts in her WBC, RBC, Platelets, and ANC, rash/hives, diarrhea, muscle weakness, headache, pain in abdomen

Pray that her spirits continue to soar and she continues to stay positive.

All the patients and families on 5A of Children's Hospital

May God bless you as he blesses the Lothrop family.

In his care,
Christine

8 comments:

Melissa Grablovic (Lohman) said...

We're praying! Take each thing as it comes, and we'll all get through it with you!

G

Cindy Dodson said...

Every day and every prayer are one step closer to healing. Praying for the counts to stay high, the kidney function test to be good and for remission to be better than before!

The Dodsons

Anonymous said...

Hi Liz, Christine, Randy and Family,
Thank you so much for sharing your blog with us. It is so comforting to Leah and I to read about someone who is in a similar situation as Leah and is doing very well. Liz, you are beautiful! You are definintely inspiring to both Leah and I. I agree with you that Mrs. Grablovic is AWESOME! She is the sister-in-law of my BFF, Michelle, from grade school. As soon as we found out that Leah had Leukemia, she has been there for us 100%. I'm so grateful to her for introducing us to you the other day. Although Leah has AML, I see a lot of similarities in your treatments and a lot of differences. Maybe when you come back and stay at Children's, I think your mom said in the beginning of February, you and Leah can hang out together. I know she is younger than you but she loves to do crafts and play the Wii and I'm just not good enough at it for her. Stay strong Liz and know that you are an inspiration to Leah and I. Can't wait to see you and your family in a week or so!

Ellen

Anonymous said...

Sorry...one more thing. I noticed that you too did a blood drive for Liz. My aunt has set one up but I'm not exactly sure how it works. I've heard that the blood donated can take money off of the bill and I've also heard that when you are given blood, you are responsible to find donors to pay it all back. Any info you could give us would be very helpful. Thanks!

Ellen

KHellman said...

Hey Liz,
Just wanted to let you know that my family and I continue to pray for you and your family all the time! I know so many people have told you this, but you truly are an inspiration to me and my family. I wanted to share something with you that I received a couple days ago that I hope you find inspiring as much as I did. While reading it I couldn't help to think of you and my grandpa who is also going through a hard time as well.

"As believers, we sometimes talk about God’s "perfect timing." I heard a radio ad for a Christian service which tries to pair up singles. But in a disclaimer near the end, the ad reminded listeners that finding a mate "must depend on God’s perfect timing."

So if God’s timing is so perfect, why does it sometimes seem to be so slow? I never hear people complaining that "God has blessed me with so much, so quickly that I just can’t handle it all." I do hear people lamenting how slow God seems to be in answering prayers or dealing with problems in their lives. We want God to deal with things A.S.A.P. and we can't understand why he sometimes takes so long.

Sometimes, God’s "slowness" is for our own good. Sometimes, in our over-confidence, we ask for too much, too soon, and God knows that the result for us would be disastrous. Sometimes, God’s perfect timing is slower than what we want; yet in his wisdom, God gives us, not what we want, but what we need. If God seems slow in answering prayers, remember that he knows what you need, as well as when you need it, even before you know that you need it in the first place."- Jay Jay Dailey

I hope you get something out of this like I did. Just know that even though the timing may not be what you would like or feel right, God has his set ways for you and I believe will do anything and everything he can to make it go as fast as it can! Keep thinking positive thoughts and know we are all beside you every step of the way!
-Katie Hellman (former student at Sycamore High School and sister to Kari, a student of your dads)

Anna* said...

Hey love! im so glad i know whats going on. well this sounds like its going to be the stage that you are going to have to fight your hardest to stay strong and keep your spirits high. and this is the time that all of us need to come together and continue our prayers for you. i know this is going to be tough on you and your family. i want you to know that i will be right there with you the whole time. if you ever need anyone to talk to i will always be there no matter what.
i dont know if you remember but in my last comment i said you and your family were special. that even though you are going through more than any person should ever go through during their entire lives, you keep smiling and always find something good out of everything. well you putting the other people in the hospital on your prayer list proves it. you all care bout other people and what happens to them.
mrs. lothrup i know you are scared. i honestly have no idea of what i would if i was in your situation. you have been so strong for liz and the rest of us. and just so you know its okay to be scared. i am too. and im sure everyone out there who knows liz is scared too. i know the side effects will be awful to deal with. but i also know she has the love and support from you and that will make it all easier for her. and if there is anything me or my family can do for you to make it easier please tell us.we want to help in anyway we can.
well im going to leave off with this. our first tourny is this weekend. and liz this tourny is dedicated to you and your family. well i hope i can see you soon! i miss sooo much! i love you lots and dont u never ever forget it! fight hard and keep being strong! and no matter what keep being the liz we all know and love.
<3 anna

Kendra said...

Thanks for the specifics in your update! My thoughts and prayers are with you.

grz said...

lizzy:),
I was really bummed that I couldnt come see you after our scrimmage last Sunday. I wanted to so bad...but sadly I was sick. We will just have to see each other a different time...soon! I really hope that everyones praying has helped you. Just know that everyone is there for you to help you and your family with whatever you need. Just let me know if you need anything at all...even if you just need someone to sit and talk to. Im there for you always.know that. Dont give it a second thought if you nedd something let me know. You and your whole family are so strong. when I realize what you guys go through every day..it makes me stop and think about how lucky me and my family are. You really are an inspiration to every one. Even if you dont know it, your a role model to a lot of people, including me. well I hope that you fight hard through this next phase, we are all with you. love you lots:)
love, emily