Save The Date!

We are so excited to let you know about an awesome event in our area to support Be The Match! 

We hope you are able to head out to the Mitten Brewing Company during the month of February or on Monday, February 25th.  What a great way to help add potential donors to the Registry!  YOU could save a life...please consider joining Be The Match.  We will be forever grateful to mom's donor. 

Hope to see you there!

Beth

Good Results!

Well I finally got my call from U of M this morning!  Evidently my Dr. is at a conference and needed to review the results before I could be called.

At any rate, the bone marrow biopsy showed NO signs of disease.  So I went from 2 biopsies that showed Stage 3-4 disease to no sign of disease.  They followed 3 cell lines.  Two of the cell lines showed 100% donor cells.  A third line which showed chimerism before (a ratio between donor stem cells and host stem cells) showed 41% my cells.  It was 35% before and the nurse said that was an insignificant amount of increase.  She also said they will probably lower my immunosuppresion drugs at my next appointment and that usually does the trick.

To tell you the truth I am really surprised at the absence of disease.  I have been warned over and over again that myelofibrosis takes a long time to heal.  I was expecting a lower level of disease to be present.  One of the PAs in the hospital explained to me that with my disease not only is there scarring in the marrow but also pockets, and it is very difficult for the donor stem cells to find their way and to engraft. 

Naturally it will be REALLY good when everything is 100% donor cells but realistically that could still take a while.  I am grateful for what I have for today.

My strength is starting to come back.  I don't think the transplant took me down.  I think the chemotherapy prior to the transplant and what they give you so the donor cells thrive made me so weak, shaky and tired.  I do feel as though I am coming back and that also lifts my spirits!

I am so thankful for what modern medicine can do.  More than that I have felt the Lord lifting me up, not just from my own prayers but all of yours.  I cannot count how many people have been praying for me, caring for me and all of my family.  I still have a ways to go so I won't get ahead of myself but when you have been handed so much bad news, a little good news goes a long way! My Dr. told me I need to appreciate the "right now" and I intend to follow more of his good advice.

So one more plug for Be the Match.com.  If you are young and healthy enough to become a donor, please consider how easy it is to be someone's Hero and save a life.  You will receive a kit at home which requires 4 cheek swabs to be on the Registry.  If you get the call you must be willing to accept the responsibility to donate.  You will get 5-6 neupogen shots, one each day.  If you are not able to go to get them they will come to your house and administer them.  Then you go to your local donation center, they hook you up as if you are giving blood, they take your blood and it goes through a machine that spins out the stem cells and puts your blood back into you.  Your stem cells regenerate in about 24-48 hours.  Folks that is it!  Imagine saving a life by some pretty minor inconvenience.  I spoke with a woman this week who donated to a 4yr. old boy in Argentina who had leukemia and he is now 21yrs. old.  We have this life saving technology and only need donors.  Remember out of approximately 10 million donors I only had 2 potentials.  About 5,000 people die each year due to a lack of a donor.  So there you go, please consider it carefully.

Again, my love and appreciation to each of you.

Grace and Peace, Peggy

Nothing But Good News

Well we just got home from Ann Arbor after an appointment with Dr. Magineau.  He was very pleased with how I look and how I feel.  What he knew from the bone marrow biopsy he was pleased. The first two biopsies that I had (pre transplant) resulted in what they call "dry taps".  That is exactly what it sounds like.  They were unable to get any pelvic bone for the first several taps (needle into my pelvic bone).  My 30 day biopsy resulted in some pinkish bone.  The one I had last week was nice and bloody, Dr. Magineau called it "juicy".  I don't mean to turn any of you off with my descriptions but when your bone marrow doesn't produce blood, that's a problem!  So just from the looks of things my bone marrow is healing.

An important factor which is called chimerism, which is the ratio of my donor's cells to my cells is not available yet.  I have to call back on Thursday to get those results, which as you can imagine is pretty important.  Last time if you remember, one cell line they followed was 100% donor cells and the other one was 65% donor cells and 35% me.  What they don't want to see is my percentage growing.  It is OK for it to be the same.  As he has told me many times over, this is going to take time.  So I wait. 

Another question I had regarding blood transfusions.  He said some people go a full year getting transfusions and that is perfectly normal.  We don't know how long I will need them but probably will for the foreseeable future. He may also start tapering some of the many meds. that I am taking, although I tolerate them better than many people do.

I am gaining strength and feel better today than I did a week ago.  It would seem that I am gaining ground.  I still need to be very careful, especially not to be around anyone who is sick.  I carefully follow through with everything the Dr. asks of me. He told me today that I am one of his "Star Patients" so that made me feel good.  I will be honest here and tell you I am anxious to hear the final results of chimerism and to know for sure that my old diseased cells are on the decline and the new healthy ones are growing and are healing my non functioning bone marrow.

I still covet your prayers and am trying not to let anxious thoughts rule my thought life.  I have so much to be grateful for.  All of you have lifted my spirits in so many ways and have exemplified true friendship.  My family also has been so supportive and helpful.  I know I keep saying this but I could never thank all of you enough for what you have done for me.  Please accept my heartfelt thanks.  I had no idea so many people cared so much for me.  I will update the blog when I get the results back later this week.

Grace and Peace to each of you.   Peggy