Coming Home

Well, Thursday's doctor appointment did not go exactly how I thought it would!  All the news was good but in a surreal sort of weird way.  After reviewing the 1st two days of testing, and especially the Cardiac MRI, my doctor here at Northwestern and at home at the Mayo Clinic have both decided that we should wait another six months before we proceed with the Stem Cell Transplant.  This might seem like bad news, but in actuality it is good.  The Stem Cell Replacement has been proven to arrest the Scleroderma and improve lung functionality in most cases 25-50%.  In 20% of patients with this disease, a body can do this on its own.  They feel like I may be falling into this group because since June my skin seems to have softened a little and all of my tests on lungs and heart have held steady.  I came to Northwestern with my mind completely set on this transplant and had no impression that this could happen.  With all the dates and schedules set, I thought it was a done deal.  I was prepared, my family and friends were all praying.  Well keep praying because God is the Great Physician and I believe he is with me and wants to show everyone that faith, hope and love are the best medicine for the soul and body!

It has taken me a few days to put some new wind under my sails and I am sorry I haven't been blogging.  I was thankful Dan was here to listen and help me keep positive.  They canceled my Cardiac Cath on Friday so Dan and I spent the day basically riding the subways and buses around town.  It was very hard to keep my mind from the what if's and why's, but poor Dan just kept reminding me that he loved me and all would be ok!  The doctor called me on Friday morning to talk to me again and just reiterate that at anytime in the next 6 months, if I would start to have symptoms indicating heart issues, that I would be moved up and that he felt 100% confident in his decision.  That the benefit wasn't worth the risk for my case, at this time.  I still had lots of questions though and was really stressed out, so I paged him and he called me right back and talked to me for another 30 minutes.  That helped to relieve some of my anxiety, frustration and anger that I was experiencing.  I think it probably helped for Dan to have a better Friday evening and Saturday too!

So I have called most everyone who had arrangements to be here to let them know the change.  For most of you I am sorry you have to read this and not hear from me personally.  I hope to address and explain to all of my friends in person very soon.  Plus I will post some more about the last two days spent here in the windy city.  I was waiting for Dan to get home this evening to talk to our kids before I sent this.  Remember the cell phone doesn't work to good this high up in the air and I did not want the phone to cut out on such an important conversation.  I talked to them both tonight and they seem relieved. Look for another post soon.  I love you my friends and family with all of my heart!

2 Days of testing done

Well so far it's been a long 2 days of tests and more tests.  I think the lab technician drew 20 tubes of blood.  Thank goodness she knew what she was doing.  The cardiac MRI went really well too.  They cancelled a CT scan that I had scheduled and that was fine by me!  Today the tests went just as smoothly.  Tomorrow I am scheduled for a cardiac cath.  If you all are wondering why I haven't been available, let me count the reasons.  A very wonderful cousin of a friend has loaned Dan and I his condo, just one slight drawback, I mean very slight!  You have to go outside to get phone reception (it's on thre 29th floor and it's 22*) can you say burrrr!  It does have WiFi but I haven't figured out how to connect so anything I do has to be done from the lobby.  There really hasn't been much time in the hospital between tests and Dr. Appts.  Lastly I caught a cold on the airplane, even though I was very careful, so very tired to say the least.  Please everyone continue to pray all goes according to God's plan!  I love you all, God Bless our family and friends!  Oh and lift up a prayer for a homeless man named Rolland that prayed with Dan and I yesterday.  Love you all!

Almost Christmas!

Here is a quick update on the things that have been happening in the last month.
1st and most important!

Words cannot express my gratitude and the gratitude of my husband and children towards the generosity of our family and friends.  God has put the gift of giving upon your hearts and I know that through His Grace, all that we need, will be provided.  God’s timing is not always our timing, but if we pray, He will be there.  Many of you gave to my medical fund and I was unable to thank you personally, so I wanted to let you know that we do thank you and I pray for all of my friends and familyeveryday. I believe that God is working through me and will heal me, so that I can be an inspiration to many who suffer from auto-immune diseases and all the others whose lives I hope to touch.  During the season we celebrate Christ’s birth, please know that my family wishes you good health, peace, love, family and most of all Hope when sometimes it seems there is none.  If you need any special prayers in confidence please know I am happy to do that for anyone.  Thank you all again for your generosity.  PS - so far with all of the fund raising we have over $15,000 in our medical account!
 
My Schedule so far:
Jan 3 -  Dan and I both are flying to Chicago.  I am so thankful he is able to come for the 1st week!
Jan 4-6 Much testing and appt. with Dr. Burt
Jan 9-12 More Drs. to see:)
Jan 13 Placement of PICC Line
Jan 16 Mobilization/Chemo - overnight stay at hospital
Jan 17-25 Watching my counts and taking some shots
Jan 19-22 Lil Berry will be staying with me.
Jan 23-28 Tanya Mihailov will be staying with me and flying home with me.
Jan 26 Stem Cell harvest from my blood
Jan 28 Fly home

Feb 8 Fly back to Chicago (My friend Janice will be accompanying me till 13th)
Feb 9-13 Chemotherapy
Feb 14 Transplant (Valentines Day- ain't that sweet)
Feb 15-19 Recovering in hospital (My sister Lynda will be flying in from South Dakota for the duration)
Feb 20-29 Recovering in Chicago close to the hospital
March 1 - Home Sweet Home

Let the Journey Begin!

I am very excited to announce that I will be leaving for Chicago to undergo Stem Cell Replacement Therapy at Northwestern University on January 3, 2012.  I believe that this will arrest my Scleroderma and allow me to begin to live my life again.  If you don't know much about Scleroderma you can go to http://www.sclerodermafoundation.org/ .  It has been a long 4 years but through my faith and belief that God has a plan for me, I know that this procedure will be successful.  I will use this blog to update family and friends as to my progress.  I know not everyone uses the computer but hopefully this will at least reach most of you.  Please feel free to pass the Blog along to those that I may not have email addresses for.  I will attempt to give a brief schedule of my upcoming trip.

January 3, 2012  Fly to Chicago
January 4, 2012- January 12, 2012  Begin extensive testing to make sure my heart and body are strong enough for the procedure.  This will include many tests like a Cardiac Cath and MRI of the Heart.  Though I have already had preliminary testing, I must still have the extensive tests.  I know they will all turn out great so I am not worried about not being able to undergo the treatment.
January 13  Line placement for Chemotherapy
January 16  Chemotherapy  1 Day to release Stem Cells into my blood
January 17 - 26 Some daily shots and Laboratory Testing - My friend Tanya will be there to help:)
January 27  Harvesting of the stem cells from MY blood.
January 28  Fly home with Tanya and be home for 10 days.

February 8  Fly back to Chicago
February 9- ???  begin 5 days Chemotherapy and in the hospital until my stem cells are given back to me and my blood counts come up enough for me to come home.  During this time Danny will be with me and also hopefully my sister Lynda.  If you are interested in coming to Chicago let me know and i will tell you the approximate best time.  Remember its COLD there and I will be in the hospital and some of the time I will be in complete isolation.  I really don't have many details but as I get them I will post them in this blog. 

Yes I will come home bald:)  I will try and have some form of communication like Skype.  Salome will stay with my kids but they may need some help with rides etc.

My request from each and everyone would be that you pray for my family, that we are strong and use our faith in God to guide us through this difficult time!

Through Faith in Jesus Christ!