Thursday, January 29, 2009

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

Friday, January 23, 2009

So Anna wants to know whats been going on!

 
Alot of this...Christine administering Chemo to Liz.
 
Meet Melissa Grablovic, Liz's teacher from Mason Middle that became certified to home school teach Liz. She has become a part of the Lothrop family. Truly a blessing. Her spirit is contagious!
 
One of Cathy's best friends Riley came over Saturday night so that Christine and I could go out on a date. Liz loves Riley's company. She has been a true friend.
 
Posted by Picasa
Liz's stylist from Allure, Christina Schnitzler visited this past week and treated both Liz & Christine like princesses. Not the first time she has visited. God has a way of placing special people in in our lives no matter what the circumstances; Christina has a presense about her that lifts everyones spirits.
Joel & Liz hung out for quite a while together on "Orange Tuesday" this week down at Childrens. They have a pretty unique bond.

Saturday, January 17, 2009

Christine was getting ready to send out "Counts 101"...b/c she thought we may all need an update as Lizzy prepares to go into her 3rd phase of chemo, The Interim Phase. I told her I was starting to worry that I was about out of a job b/c she is so well versed these days, so she graciously let me send out a Lizzy Update! (Thanks Christine!) So lets dive in....As you know, the chemo is a 2 edged sword. It certainly knocks out leukemic cells, but in the process it can also have difficult side effects for Lizzy. The most important telling signs of the effect of chemo are the blood counts. The normal ranges are as follows: WBC (White blood cells) 4.5 - 13.5, RBC (Red blood cells) 4.10 - 5.10, Platelets 135K - 466K, Hemoglobin 12.0 - 16.0, ANC (Absolute neutrophil count) 1,080 - 8,000.

As of this past Friday Lizzy's "counts" were: WBC .09, Plts. 66, Hmg. 10, and ANC 400. So as we can see, The Consolidation Phase, that Lizzy is about to complete, has really dropped her counts. Low WBC's mean a very compromised ability to fight infection. Low Plts. mean decreased ability for her blood to clot, Low ANC means she barely has any "good cells"...

Can you imagine...I sure can't... Yet, with Lizzy's counts being SO low, Christine tells me Lizzy was taking pictures of her when she was giving Lizzy chemo last week. I can just picture it....Christine giving Lizzy chemo ( I need to just stop= and think about THAT for a minute).....and Lizzy making light of the moment...taking pictures!

As January comes to an end, Lizzy will be wrapping up her 2nd phase of chemo (The Consolidation Phase). The next few weeks are critical. Lizzy will continue to finish up the chemo protocol, and she will undergo a new, very draining test on the 27th. She will have a GFR test. I am not sure what that stands for, but it is a test of her kidney function. It is a 4 hour test in which they will inject dye over a 2 hour period, followed by blood draws every 30 minutes for the next 2 hours. This test is important b/c not only do they want to see how Lizzy's kidneys have been handling all this chemo, but they want to assess how Strong her kidneys are going into the next phase.

After the 4 hour test in the morning of the 27th, Lizzy will then receive chemo in the afternoon. It will be long, tiring day.

In the next phase, The Interim Phase I, Lizzy will receive "High Dose Methotrexate." She has gotten methotrexate before, but not high dose. In High Dose, the methotrexate is infused IV over a 24 hr. period, followed by 6 shots over a 2 day period, of a different chemo that helps the effectiveness of the methotraxate (I think). The Interim Phase I should begin on Tuesday, February 3rd. .(Are ya still wearing orange on Tuesdays?!) In this phase Lizzy will go though 7 day cycles of chemo, with an inpatient stay every 10 days for 3 night/4 day stay. This phase lasts 57 days.

In the middle of Christine filling me in on all of the treatment details, she suddenly embarks on a totally different track. She excitedly tells me about the birth of her nephew! Blake Gerald was born on January 13Th weighing 8 lbs. 13 oz. Blake is Christine's sister's first baby and the Lothrops are THRILLED!!!! Again, I continue to be amazed at Christine's and her family's determination to look on the bright side of life, and celebrate with others. Here she is...telling me about chemo therapy for her daughter (Of all things)...and she slides into celebrating her sister and nephew!

Additionally, Randy was out skiing with Jimmy today. He called and talked about the family going to dinner, but Lizzy's ANC is too low, so Christine declined...she did mention she hoped he'd bring her and Lizzy home take-out though! (hint, hint!)

As far as meals go, the Lothrops appreciate getting meals on Tuesdays...clinic day (Orange day too!). Those can be long days, and they are never sure what time they will be home. Sometimes as late as 7pm or so. Christine also appreciates meals for Jimmy when she is in the hospital for 3 or 4 days with Lizzy. Randy usually pops down to the hospital for a bit, and she worries about Jimmy. If you would like to help with meals, pls. call Annette Sargent at 573-0013.

Lastly, please=call Christine before you visit...her cell is 349-5966, and her home is 234-4565. Lizzy enjoys friends, but when her ANC is low you can not visit unless you are over 14 and have had the flu shot, same rules apply at the Lothrop house as in the hospital. Additionally, Lizzy may be not feeling well. (Although she wouldn't admit it to anyone but her mom!)

The Lothrops THANK YOU for your continued prayers.
Please join them in Thanking God for: Lizzy having no headaches this go-round, and for her to not have to go to the hospital after this past dose of "Ara - Stinking -C" ( Ara-C). Please pray for good results from the kidney test on the 27th, and for minimal mouth sores going into the 3rd phase. (Mouth sores are common in this phase and are VERY painful....making eating, or drinking, or even being comfortable very difficult.) Additionally, Lizzy's Plt. count needs to be 75K or greater, and her ANC 750 or greater to go on to the Interim Phase I.

In closing I wanted to mention a passing comment that Christine made to me last week. We were talking about The Christmas Holiday, and how wonderful it was to have their whole family together. She said that they were grateful that Lizzy felt well enough to be out of bed on Christmas. Lizzy also felt well enough to be out of bed for most of the day on one other day. ....Yup - as I understand it....Lizzy had 2 days of feeling really up to par. And I thought to myself...."Wow,....we,...those who love and want to surround the Lothrops, the Glitter Girl community at large, really only get a small look at life at the Lothrops. I think in reality, there are some very hard times...Let us PURPOSE to continue to pray for their every need, and for Lizzy's total and complete healing. And let us all stay alert to the everyday ups AND downs that they cycle through. I want to challenge myself, and you to join me....in praying for the Lothrops each and every time they come to mind. Let us be open to God's promptings...fast?, pray?, serve?, hug our kids?, love our spouse?, call our mom/dad?, right a wrong?...(By the way...love is a verb!)

God's word tells us He will use hard circumstances for good....He will...He does...He is (Romans 8:28)! During this season, the season of chemo treatment (2 years or more)....let's not miss the opportunity for Him to work in OUR lives, as well as the Lothrops! I want to encourage the Lothrops, and each of us...with this promise...God tells us, in Ephesians 3:20-21 - "Now to Him, who IS ABLE to do IMMEASURABLY more than all we can ask or imagine, according to His power that is as work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever!"

Thursday, January 15, 2009

Catherine Needs Help with Relay for Life!

Ok everyone! I NEED HELP! I am doing relay for life this year and we are making a giant slideshow that will be playing all day while raising money to find a cure for cancer and i am in charge of it. Here's where I need you. I need as MANY pictures as possible of people who had cancer, died of cancer, or is a cancer survivor! I need you to send me their picture as well as a favorite quote/bible verse or uplifting story from that time that will go on the picture. Pleaseeeeee help me out with this, the more i have the better and so far only about three of the 150 people i have asked have helped so hopefully facebook pulls through for me. Just know that when you give me the picture it WILL be public! the email to send it to is catherineclothrop@hotmail.com THANK YOU!

Tuesday, January 13, 2009

Unbelievable!!!!


Have you ever heard of two of the top ranked teams in the city, moments before they stepped on the floor, that got together for a group picture in support of a cause?
That is exactly what happened Saturday night!
From this picture, if you didn't know any better, you'd think they were one team! Mason & Sycamore an awesome fought game! Two teams with BIG hearts that left it all on the floor.
I can't express what an overwhelming feeling it was for Liz, Christine & I to walk in the arena at Mason and see all the "Layups for Liz" jerseys that both teams where warming up in! It was truly a night to remember. Just adding fuel in Liz's tank for the battle that she is fully entrenched in.
A special night with special people!
You don't have to be in a church to find holy ground!
On January 10th, @ the Mason Arena, God was smiling!

Sunday, January 11, 2009

Saturday, January 10, 2009

Making it through! Joel and Lizzy playing Bananagram.




Well here we are at the end of her second round with the Ara(stinkin)C, as lovingly termed by Joel Brown. This drug is not a favorite for either Joel or Elizabeth.

For the ones who follow our blog and do not know Joel Brown let me introduce you to him. You always hear when God closes one window he opens another; Joel Brown and his family are the other window. Here is some background:

Elizabeth and I were in our room at the hospital during her 33 day Induction Phase and in walks a young boy and his mother. Joel and Elizabeth have gone to Mason K-8, they are in the same grade, 8Th, they played a lot of the same sports and have mutual friends but the two had never been in any class or been on the same team at school. THEY HAD NEVER MET UNTIL THAT DAY AT THE HOSPITAL. See Joel was diagnosed with ALL, the same leukemia Elizabeth was diagnosed with however Joel was diagnosed 4.5 months earlier. He and his mom, Laura, came to meet us and give us their support. We have since become fast friends. Our families are so similar that I sometimes feel that I am looking into a mirror and seeing our reflection.

Joel and Elizabeth are now enrolled in the same class, it is called the class of Survival and Character and they both are passing with flying colors. I am so thankful to God for opening this window, even though it means a lot of pain and sadness at times. Pain for Joel and Elizabeth and sadness for the parents having to watch their kids struggle with the drugs they are given to help fight this cancer.

Joel was a rapid responder and Elizabeth was a slow responder in the Induction Phase which means they should be ending their protocol at about the same time. I think I feel a huge community celebration coming on in about 2/2.5 years.

Elizabeth finished out the week on a much better note than which she started on. The emeisix (vomiting) is under control thank God for this. Because of your prayers she is not having any of the other side effects so please continue to pray that she does not start; we still have another week with this drug.

Elizabeth's counts are still high. Her ANC is 2300, a great number, her Platelets are 144,000, another great number, her WBC, white blood cell, is low at 2.3, and her hemoglobin is going down and is low at 11. This is the one that carries her oxygen though out her blood stream. She made need blood and platelets by the end of next week. This weekend is a good weekend to visit and she would love to see you.

Thank you all for your continued support for Elizabeth, our family, the fundraisers for research for cures, and for Elizabeth's medical account. Your prayers, love, and support are something that we could not do without.

Many blessings,
Christine

Wednesday, January 7, 2009

Day 30 of Consolidation


Elizabeth and Aunt Theresa snuggling and sleeping before the start of day 29 of the Consolidation Phase...I thought she felt puny then.....

Whew.......what a day. We are now home from our overnight admit from day 29. If today is any indication of what is to come from this AraC over the next two weeks we are in for a nasty ride.

Most of the morning was spent finding a way to keep her from vomiting. She gets pretty ugly when that happens; I can't say I would be much better! One should never see a toilet from that view point, it is just not a good way to start the day or end the day or any way in between for that matter.

With the aid of Zofran, Benadryl, and Phenergan, we managed to get everything under control and she finished out the day by sleeping it away. This will be her protocol for the next two weeks. Her good days should possible be this Sat., Sun., and Mon, and I know if she is feeling well she would love to have friends over.

We will go back to clinic on Tues. for a physical and they will monitor her blood counts through blood draws this Fri. and coming Mon. By Tues. or Wed. of next week her counts will begin to drop and she will not be allowed to have visitors.

Elizabeth continues to meet this challenge and journey head-on. She is a remarkable girl and I learn from her every day. Just watching her struggle and yet gives out grace when she is so very sick is such an inspiration. I truly do try not to complain anymore; I have no reason for complaining. God is taking care of all our needs and gives us strength when we need it and even when we don't think we do. He is truly a marvelous and awesome God. I hope all of you get a chance to experience him and his over-powering love for each and every one of us.

Please continue to pray for her side effects:
Severe abdominal pain
Emesix (vomiting)
Mouth and GI sores
Muscle and joint pain
Kidney and bladder failure

As always please pray for our families on the 5Th floor of Children's and baby Claire Pope; she may be going home with her mom, Lizzie's Dr., Dr. Jen, next week.

I will continue to pray for all of you and your families and the blessings and strength you are continuing to give Elizabeth and my family.

God bless,
Christine

Tuesday, January 6, 2009

Day 29 of Consolidation

Here we are back in Children's on the 5th floor A-546 South. I keep telling myself that because every time I leave this room, I try to go back into our old room. That sure would be a scare for some poor child.

Things are pretty quite in the room; Randy is laying on the bed giving Liz back-rubs. She feels pretty puny right now. I guess I would too if I was pumped full of all the chemo and meds she is. As Elizabeth says "just when I start to feel good they go and jack me up again." I just had to laugh and cry at her expression.

Day 29 is a repeat of the first 28 days in Consolidation. The one thing that has changed is no IT MTX (methotrexate chemo) in the spine. She does not have to go to sleep every Tuesday for the next four weeks. However she loves the feeling of going to sleep...a little scary don't you think?

She has received mega doses of chemo today, Cyclophosphamide which takes about two hrs to prepare the body for it, 30 min. to give it through her port, and 24 hrs. to flush the dead cancer cells out of her system, AraC, cytarabine, which is a four minute push through her IV, and Mercaptopurine, which is two pills. The Cyclophosphamide will stay in her system for the next four plus weeks, the AraC (cytarabine) and the Mercaptopurine I will give at home over the course of the next two weeks. If you remember, the AraC is the one that put her in the hospital a few weeks ago. This chemo drug is wicked and we both hate the side effects. She will meet up with this little devil later on in her protocol too. YUCK! I swear she shutters when you even say the name.

If all goes on schedule she will begin the next phase called the Interim Maintenance 1 on Tues., February 3rd. Of course all the numbers need to be in place, her platelets of 75,000 and ANC of 750. There will be new drugs to introduce to all of you, a new schedule, and new and old things to continue to pray for. Tune in for and Interim Maintenance 1 update in a few weeks. I love cliff hangers don't you?

Please continue to pray for:
Elizabeth's health and the health of her family
minimal side effects
NO EMESIX (vomiting) Randy does not like the word vomit so I am using the medical term
Elizabeth's docs, nurses, housekeeping staff, and all who have committed themselves to her care
all the children and families on the 5th floor at Children's

I just want to say thank you for all of your prayers and support. I don't know where I would be without God, my family, and friends. I will be keeping all of you in my prayers.

Blessings,
Christine

Monday, January 5, 2009

Team in Training!

Wanted to share a letter from two of my colleagues from Sycamore:
Dear Friends and Family of the Lothrop family,
Along with a colleague and fellow teacher at Sycamore High School, Mike Gutekunst, I am training for the Flying Pig Half Marathon as a member of the Southern Ohio Chapter’s Team In Training program on behalf of The Leukemia & Lymphoma Society.
Team In Training (TNT) exists to find a cure for leukemia, lymphoma, Hodgkin’s disease and myeloma. It also looks to improve the quality of life of patients and their families. There are currently more than 747,000 Americans living with a blood cancer. Dramatic improvements in treatment techniques for these diseases made in the last 40 years are due in part to the money that The Leukemia & Lymphoma Society has raised to aid researchers in their fight to find cures for these diseases.
TNT is The Leukemia & Lymphoma Society’s largest fundraising program, bringing in over 114 million dollars this past year alone. Each participant in the program pledges to raise a certain amount of money during the 4-5 months they train for this event. Mike and I have been asked to raise $1900 for our team.
The money we will raise for research is fulfilling, but the most important and inspirational part of our training is knowing that our hard work could make a difference in the life of our Honored Teammate, Liz Lothrop. Though we have never met Liz, we know from Randy that she is a beautiful, active, intelligent young woman who needs our help.
Liz is the reason Mike and I are committing ourselves to this goal. With her as our inspiration, how can we not fight our way to the finish line? It is a chance to for us to join in the battle against blood cancers.
We include this letter as a show of support for Liz, and also to ask for your support. Your donation is tax-deductable and NO DONATION IS TOO SMALL.
Check out our website at http://pages.teamintraining.org/soh/flypig09/mgutekunst
W e want to thank you in advance for your love, support and prayers! This is an exciting time and we hope you will choose to support us in our efforts to make a difference. We will be thinking of each of you, and especially Liz and the Lothrop family, as we cross the finish line of the Flying Pig Half Marathon on May 3rd 2009!
All the best,
Chad Husting & Mike Gutekunst
Sycamore High School

Saturday, January 3, 2009

Update for Tues. Jan. 6

Hello everyone,

I just wanted to give a quick medical update on Elizabeth.

This Tues., Jan. 6th, is day 29 of the Consolidation Phase. Her platelets, the blood clotting agent, need to be at 75,000 and her ANC, the Absolute Neutrophile Count, which is her immune system, has to be at 750. Her ANC's are not there yet but we are praying that they make a huge leap over the weekend.

The reason for the overnight admit is due to the drug called Cyclophosphamide or CPM which is given over a 30 minute IV drip. This chemo drug needs to be flushed through her system within a 24 hour period. Some of the damage it can cause is to the kidney and liver if not flushed quickly.

The docs are always excited about her platelets rising on their own but I get excited about her ANC's because that lets her have a bit more normal life. Seeing her friends is very important and keeps her spirits up.

The second half of the Consolidation Phase is identical to the first which was not an easy 29 days. Unfortunately the chemo drug that makes her so sick is the one that I have to give her. It is called Cytarabine or AraC. This drug is given through her port over a four minute period for eight days; by the end of the eight days this chemo has accumulated in her system and knocks her blood counts for a loop, not to mention gives her debilitating headaches and makes her vomit. I know it has to be done but it gets pretty tough sometimes. One of the side effects of the AraC is flu like symptoms and spiking fevers. Well we know that a fever means a hospital stay for Elizabeth. There is no way to tell if the fever is from the AraC or a virus so she has to be treated as if she has a virus with heavy duty antibiotics.

I think we are caught up from our unexpected hospital stay a few weeks ago. That really through us all off track. We came home on Tues. Dec., 23 but Liz did not get out of bed until Dec. 25. We thank God for giving us Christmas day to enjoy with our family. She went down again until the following week but as soon as she felt well she was off to the Beach Water Park with a group of friends. When Elizabeth is up she is up but when she is down she is down. Elizabeth typically spends 15 to 17 hrs. a day sleeping when she is not feeling well. If she does not respond to your text or phone call you know she is having a bad day; remember a bad day lasts sometimes for a week. If you become worried about her you can always call me and I will let you know what is going on with her.

Please continue to pray for the following:
All the children on the 5th floor of Children's Hospital
Elizabeth's doctors and anyone coming in contact with Elizabeth
minimal side effect of the chemo drugs
minimal bone and muscle ache
NO vomiting
her platelets to remain high
her ANC's to reach 750 for Tues.
her hemoglobin to remain in the normal range

Thank you for continuing to pray for Elizabeth and our family. God has been so gracious to us and continues to bring old and new friends back into our life.

Blessings,
Christine

Thursday, January 1, 2009

Hoxworth blood replacement drive was a huge success!




A huge thank you goes out to Dan Reed for organizing the blood drive!
What a special day it was all around on the 23rd.
We had 100 people sign up and we received 70 units of blood.
A special note...we had 50 first time donors...you are well loved Liz!