Update

Hey everybody - I'm sending for mom but wanted to let you know that she did have the transplant today and everything went well.  She tires easily but is keeping in good spirits.  We found out the donor was actually in Germany - isn't amazing that they found her match halfway around the world?  Pray for blessings and good health for her donor too.  We will never know who he or she is, but s/he has given mom a gift we can never repay. Your calls, e-mails and cards are very much appreciated.   Thanks everybody for your support and your prayers!

 

We love you all!

 

Cayti Burch nee Lewis

 

P.S. We are having a Pampered Chef fundraiser online - the invitations said the party was Tuesday, but it is an ongoing thing on-line and you can place orders up until December 15.  A portion of the proceeds will be donated to National Foundation for Transplants for Peg Lewis so check and see if there's something you might like for yourself or for a gift. 

Each day is a day that God has given us, and each moment of that day is in HIS hands.

Thanksgiving Day

I am going to Dallas at 5:00 am Tuesday morning.  I will have central line placement and physician visit wednesday and admitted to Baylor at Dallas on Thursday.  I will start  IV chemo for six days (which is a big change) and will have the stem cell transplant a week from Friday.  Tony is staying at the Twice Blessed House on the Baylor campus.  

 

Say a prayer please.....

 

Love, Peg

Transplant Update

Today I was notified that the donor will not be able to come in until the 16th.  It then takes seven to 10 days to clear her to be a donor.  I will be going to Dallas about a week before the actual transplant date which is now tentatively the first week of December.  Please keep praying as we keep trying to increase transplant funds, try not to get to nervous and pray for Tony's work.  This is the 3rd time he has had to change his vacation and time off.  This also means i will not be home for Christmas.

 

Thanks.  Love, Peg

The transplant has been postponed for another week. This is sure stressful. Would appreciate a lot of prayers right now. The only things we are missing is snacks (diabetic) for Tony and anykind of restaurant suggestions. Tony is going to have to cook for us everyday or go out daily. I appreciate everyone's help. The motel is $40.00 a day for six weeks. We are just lifting up to God to supply. Peg

10/10 update

Dear Friends and Family,

I heard Friday that a match has been found and I will be leaving for Dallas in two weeks.  We will be staying at Dallas in the hospital motel which is $40.00 per night.  It is about the cheapest we could find and has transportation to the main hospital each day.  I will go in for transfusions and lab daily.

Please pray that the stem cells take and for continued life for me.  I appreciated all that everyone has done, all the prayers and help. 

We still do not have the house unpacked as I get to short of breath when I do very much.

 

Love, Tony and Peg

 

MPD Walk

http://nwahomepage.com/content/video/?watch=1&cid=121622&shr=addthis&shr=addthis

View News Coverage of Saturday's Siloam Springs MPD walk

9/10/09 Update

Went to the doctor today and it looks hopeful that my stem cell transplant will be next month.  Please put us on your prayer list.  Dallas went very well.  We will be going down before the transplant to get squared away.  They have apts that you can stay in and will pick up up and take you to the hospital everyday.  This hopefully willl be done as an outpatient.

 

Thanks for everyone's support.  Sat the 19th is our hopefully big fund raiser at Siloam Springs which is a 5 K run.  Just please keep praying.

 

Love, Peg

08/20

Tony and I are in Fort Worth staying with a young man and his family who were in the girls youth group when younger. It is truly amazing how God supplies with people when we are need. Chris and j0lene have 2 of the cutest children who are utterly delightful....

We go to see the Transp;lant specialists in the morning. Please pray for wisdom and clear direction.

Transplant

Just a note to let everyone know that I will not be able to go to Houston Friday due to finances.  Please lift us up in prayer that we can have wisdom and peace.

 

Thanks.

 

Peg

Each day is a day that God has given us, and each moment of that day is in HIS hands.

Update

Just waned to touch base with my family and friends to let you all know what is going on.  I never could get MD Anderson to send notes or information to my oncology Dr in Tulsa.  Two of the doctors there remain conflicted with what each think of a diagnosis and just to say this made me real nervous.  After talking with Dr, Lynch, the Tulsa Oncologist, I am going a week from Thursday and Friday to Baylor at Dallas for a second opinion and evaluation for stem cett transplant.  Tony and I will be leaving on Thursday and return eithor Frid or Sat.   We have moved into our new house between Claremore and Pryor.  It is about 25 minutes from Tulsa and out in the country somewhat, at least enough to let Tony think he is in the country. However, I can see neighbors and other houses so feel ok with this.  Our new address is 1237 N 4266, Pryor, Ok 74361.  Our cells are the same.    Cristy moved into our house at Siloam as her and Jason are no longer.  He has quit his job and moved to California.  This has been extremely hard on their three little girls so please pray for them.   I have lost more weight, and have felt a little yuckie lately.  Maybe I have done too much.  I still have boxes all over and hope I will get these undone before I am 90!   Please keep in touch.  I am trying to keep busy with quilting and  crafts but get tired easy.   Love, Peg Each day is a day that God has given us, and each moment of that day is in HIS hands.

Fundraising Opportunities

Please check out our Partner with Peg Page for exciting ways that you can partner with Peg to fund life-saving treatment.  Including an auction for a brand new La-Z-Boy couch valued at over $800 (starting bid only $300!!!) and find out information for partnering with the 1st Annual 5K in Siloam Springs, Arkansas.  

Thank you!

7/14/09 Update

Just an update to let everyone know that I found out today that Carol, my sister is not a match for the transplant.  Very disappointing but I know God will provide.

 

I am requiring fairly frequent transfusions and becoming tired a lot earier than the last few months.  My pain is fairly well controlled.

 

We are moving to a new house closer to the doctors and hospital located outside Claremore.  Will send information in a week or two.Phones will stay the same.

 

Please pray for our family, finances, as this will cost about double than if we could have had it in St. Frances.  MD Anderson also requires a 24 caregive for 90 days while you ar ein Houston.  Please pray for my family and friends who will help with this.  Please pray for continued wisdom in making these decisions.

 

Thanks and miss everyone.

 

Peg Lewis

Each day is a day that God has given us, and each moment of that day is in HIS hands.

Update 6/25

I have spoke with MD Anderson twice today. I certainly would like to think they are more organized than they appear. They found out that Cayti is not a compatible stem cell donor. Carol's is still pending, Please pray for us that Carol can donate. It will be about 1/2 the cost at 100-200,000 to the stem cell transplant, plus I can have it in Tulsa. Silent auction up this weekend. Two great items. Zios & bows

Update 6/16/09

I was diagnosed with myelodysplastic syndrome/jak 2/idiopathic fibrosis this week.  This is primarily the same as the original but with a little spin.  This has a 40% CURE rate with Stem Cell Transplant which is why I have opted to have this done is 30 to 60 days.  Please pray for me and the family.  There is approximately a 20% morbidity rate however there is 100% chance that I will die before sixty without it.  What a choice huh? However, I have a real peace about this and know I will be in God's hands.  The other piece of good news from this is that it can be done in Tulsa (we think as this changes every other week)  I will be in the hospital about 2 months and have about an 18 month recooperation time.    We  have also decided to postpone the Appleby's fundraiser until later.  I have been extremely stressed and a little under the weather.   We will still do fund raisers and hope to raise money as Tony has to stay at the hospital for about 2 weeks once this procedure is done.  The cost will be about $250,000.  I know I about had a heart attack when they told this to us.  I have appreciated the continue support both spiritually, with the donations, calls and cards.  This has meant a great deal to us.   We are looking for a house to rent or rent to own type thing in Tulsa as I will have to live there for at least 18 months.  Our house in Siloam has still not sold but Cristy will be renting it at least for a year.   We have continued to have some car repair issues that are about 2500 dollars so the whole thing together is about making us crazy so if you call and we don't sound quite right just know we are not quite ourselves right now.   We need a lot of prayer for tthe girls and their families. Dr lynch my oncologists and Tony and me..........   We are having a silent auction with many things that have been donated.  You will need to look on peglewisrn.blogspot.com forupdates and these items.   I am missing work and the people I work with tremendously.  Wish I were able to go back but hopefully later.  I have not heard from disability yet but should be hearing in the next few weeks.  I have used all my short term leave and hopefully in about 2 weeks will be able to pick up with long term disability.  These few weeks off without pay have stretched us a bit but are "ok".    Please continue to call me and let me hear from everyone.   Love, Peg ps  we have started selling the Sonic gift cards for $5.00 that are valued at $25.  We can mail them to you and you can mail the money or use pay pal.  Thanks again for all your help.    find updates on facebook-peg lewis peglewisrn.blogspot.com partnerwithpeg.blogspot,com           Each day is a day that God has given us, and each moment of that day is in HIS hands.

Fundraiser

Raffle Tickets and pre-purchase tickets for the Applebee's pancake breakfast are now available.  Visit Peg's Partner page to purchase your tickets today!!!!!

6/4 update

I have two things to update to my friends. First Sat. June 27th is an "all you can eat" pancake breakfast at Appleby's on 71st in Tulsa. It is from 7am to 10pm For 6 bucks you get all the pancakes you can eat and drink. I have been in the hospital with what they thought was a light stroke or known as a TIA. However, now they are not sure. (Story of my life). My lips and hand went totally numb twice

Fundraising Opportunity!!!

Check out Peg's Partner page for an upcoming fundraiser -- that YOU can help with!

Mother's Day Update

Just a note to say "thank you" to everyone who has helped with prayers and donations. It is a good posibility that i WILL be able to have a stem cell transplant. However, the transplant doctor says I need to be more unstable than I am now due to a 20-30% mortality rate with the transplants. I have not needed a blood transfusion for 2 weeks now. Hooray!!!

MD Anderson Update - Thursday

We were very encouraged today by the transplant physician.  He told us he didn't want to be in a hurry to do the transplant.  He felt my lab numbers were stablizing requiring less transfusions.  He is also encouraging about the new drugs to be released next month that will be started as clinical trials.  I am to come back to Houston in a month hopefully to start the clinical trial drugs.  The insurance has to approve it and the cost is $55,000.00 / year.  We will see.   These drugs have shown good promise of slowing down the progrression and alleviating the symptons such as fatigue, pain, etc.  Say a prayer. We will be driving home tomorrow.   Love, Peg Each day is a day that God has given us, and each moment of that day is in HIS hands.

Tuesday - MD Anderson Update

This was a very good day....

 

I was at MD Anderson all day.

The transplant doctor thinks I will be a good candidate for a Stem Cell Transplant.  I will not have to take as high of dose of chemo as most people due to the 'good' condition I am in.  If Carol, my sister, can be a donor, we hope to do this in about six weeks.  Pretty scarey....

That also means I have to have funds available for use.  (scarey).

I have also been accepted in a clinical trial for a new drug therapy for this type of cancer.  As it will not proably cure the disease it hopes to alleviate the symptons such as fatigue, dec. appetite, etc. 

I feel very good about this!

We talk with the social worker tomorrow and have a bone marrow biopsy done in am

The transplant will cost somewhere between 250,000-500,000.  (Can you believe that?)

Continue to pray.

 

Love, Peg

Update from Cayti

MD Anderson thinks mom is a good candidate for a bone marrow transplant - the hunt is on! There's a small chance that a family member will be a match so please go get tested and listed in the bone marrow donor registry. More updates at the www.partnerwithpeg.blogspot.com. Bone marrow registry @ www.marrow.org. They started her on a trial drug that will help suppress the disease while they look for a donor.

Houston - Monday Night

We have finally made it to Houston.  On the way down here rec'd a call from MD Anderson that one of the insurance companies only approved 'consult' and would not approve 'evaluation'.  These two words are normally the same thing in the medical field.  After several calls think we have this worked out.  

 

Will be at the hospital all day tomorrow.

Please pray for the doctors, the details for the insurance companies, continued financial needs for travel, medical costs, etc., and for wisdom about the future.

Ways you can help with our upcoming trip...

I think I can talk in complete sentences today so I will try this again.  The above website will have a list of items (under$5.00) that are needed to go to Houston.  If you know anyone who likes to make goodie bags etc.  please pass this on.  We have really appreciated all the support and help needed to get this together.  I would love to hear from from you all.  I am trying not to be so nervous about this.  My daughter Ceara just called me and sited a verse about not worrying about tomorrow and suggesting I might just go day by day.  Go figure, huh?  (I knew there was a reason we had them memorizing scripture verses when they were little----)

 

We are in need of some 'diabetic' snack bags for Tony to take on this trip.  Sugarfree cookies, gum, diet dr. pepper caffiene free, oranges, any fruit, or anything like that.  Also any crossword magazines or home type magazines.

 

A $5.00 sonic or mcdonald's gift card or anything like that.

 

We will potentiall be there leaving next Monday and may have to stay through the following Monday.  There is a big confderence in Houston which has added to some of our stress, getting things to work out....

 

On Mondaythe 18th we are having an El Chico fund raising night (71st street and Mingo).  They will be donating 10% of all the procedes to the Peg Lewis Medical Fund.

 

Also, the girls hope to have the auction up and going by the 15th.  The above website will keep you updated.

 

Our insurance with the City of Tulsa will be changing in June which will disqualify us for some of the reimbursement we would have rec'd from Community Care for the evaluation.  Please put this on your prayer list.

 

I have lost another 8 pounds and would also like prayer regarding stabalizing my weight and keeping my protein levels up.  My lab values were ok yesterday so I will not need a transfusion this week.  Please encourage friends if they donate blood to do so at Oklahoma Blood Institute for me, pretty please....

 

Last but not least.  If I do get to have a stem cell transplant, I would really like to see my sister before I go in to the hospital.  I have no idea how this would work out but please start praying for this.  Please have your church pray for us this Sunday for safety for the trip, good test results and calmness of my spirit......

 

I love you all dearly and hope I am not sending too many emails.  I need all the prayer help I can get right now.

 

Love, peg

 

also, we are looking for a cheap used laptop.  If you know of anyone who has one for sale please let us know.

Exciting News!

I have an apointment next Tuesday morning at MD Anderson in Houston. Please continue to pray for:   Safety driving to Houston   Favorable test results.   Tony and the girls   Funds to go on the trip.   and for me to have calmness of spirit, joy in what time I have, and peace about the decisions I will be making in the next week.   Love, Peg Each day is a day that God has given us, and each moment of that day is in HIS hands.

peg's update

I received an additional two unite of blood this afternoon. I go back into Tulsa on Monday for lab test again. I hope to hear from MD Anderson this week. I have had the nausea return today. Still very tired but as Dr. Lynch stated this will be my "norm".
Peg

peg's journal

I will be going into Tulsa tomorrow for another transfusion. I am getting extremely tired at times. Tony and I are trying to get one of storage sheds cleaned out (why i saved all this stuff is beyond me!). My nausea is really decreased and I have been able to stop taking the nausea pills. Pain is also decreased with the new pain patch. We have had several blessings this week. Cash donations from several people to our account plus a $300.00 Wal-Mart gift card to help with gas and food for the MD Anderson trip. Please continue to pray.
Love, Peg

I  became very ill yesterday afternoon and had to go into the hospital early for my transfusions. I think I scared Cristy and Cayti. Cristy took me halfway to Tulsa and met Cayti who took me in to Tulsa the rest of the way. After the first unit I felt much better but I think this is the 'sickest' I have ever felt. Cristy said I looked 'gray'. I have moved my doctor's appointment up to tomorrow, Cayti will go with me and I have several questions to ask him. Please continue to pray for me as my brain feels 'fried' about half the time.

Update & ways you can help

Dear Friends and Family,
As you know I have been diagnosed with Myeloproliferative Dysplasia-JAK 2-idiopathic fibrosis, a cancer that is not curable. 
The doctor’s have encouraged me to go to MD Anderson Hospital in Houston for further treatment and testing. In order to do so I need to cover transportation, lodging, medical and food expenses. An account has been set up at Arvest Bank under “Peg Lewis Medical Fund” to assist with this cost.
For more information regarding my health go to http://www.pegslewisrn.blogspot.com/
This blog with also keep you updated on progress regarding health, financial needs and most important, prayer needs.
Prayer needs at this moment include:
My Doctor’s, myself, Tony, my girls and spouses, and financial blessings so we can afford the trip to Houston.
There is also opportunity to donate blood at the Oklahoma Blood Institute on 81st Street in Tulsa. You will need my name and address (450 W. 7th #1402, Tulsa, Ok).
I would appreciate any prayers, blood donation or financial support that you feel lead to give.

In Christ Love, Peg Lewis

Please feel free to pass this on to others who know me but may not have received this email or post to a bulletin board.

To post to the blog site enter the blog site at the above address, 
Go to the bottom of the yellow box below others who have commented where there is a box titled “Post Comments”. Please feel free to write me or post comments there.

April 17th Update

Had blood work done today. It was bad. Will have to be transfused Sunday. The next big hurdle is to see is MD Anderson will even accept me as patient. If they don't it usually means there is nothing they can do for you.
Keep praying. Love, Peg

Prayer Request

Please pray for decreased nausea, finances, wisdom about job and for good blood counts Friday.
Peg