Tuesday, November 16, 2010

Day 5 Update

Mary had her transplant on the 11th.  It was anti-climatic as it was just like a blood transfusion.  The medical staff in the BMT ward came in and we all sang "Happy Birthday" to her and they gave her a gift of a beautiful throw blanket.  Debbi and I also thought it was significant that her transplant was on Veterans Day, as Mary's father was a veteran in two wars and his service to our country may have been the cause of his and possibly Mary's leukemia.  Maybe that was a sign to us that he and Daniel are working hard for her on the other side.

Now the stem cells need to figure out that they need to be bone marrow cells and get to work.

Today is day five.  Mary is pretty miserable, although all of the things that she is dealing with are normal for her treatments.  That doesn't make it any better, but at least it is not something unexpected.  She is in pain and it is painful to talk, or do most anything else.  They have given her the morphine button, so she can give herself pain medicine, instead of having to wait for someone to bring it to her.  Hopefully that will make things better.

This is Debbi's Facebook status post today:  Mary is really low right now. I just haven't had the heart to tell her she hasn't hit the bottom yet. Last night I just held her hand while we watched a movie because anything else is painful. Thank goodness for the blessings she has had and all the prayers on her behalf.

Please continue to pray for Mary and Debbi.  And please remember T in your prayers, also.  I know they could all use all the prayers they can get.

Monday, November 1, 2010

Hi all,
Well Mary was not admitted on Friday.  She was very happy to celebrate Halloween at home.  If there are no more delays she will be having her first Chemo treatment on November 3rd, and be admitted to the Hospital on November 4th.  She had to have an MRI done on Saturday to check for any spinal problems (hematomas/fractures) that would be causing her the pain she is in.  We should know the results today but they now want a pelvis scan that has been scheduled for tomorrow morning.  So if she is admitted on the 4th her transplant date will be 11/11/10 – too bad it didn’t happen next year but if it is delayed a few days then she might share the date with T’s birth date on the 15th.
We have been playing stump the Oncologist this week.  Many of you know that Sterling (Mary’s father) had AML with a trisome 8 mutation, well, Mary has AML with a monosome 7 mutation.  This DNA mutation has caused a great deal of interest at Huntsman because it is so unusual for a parent/child to have leukemia but then to have cell mutation in both of them is a new encounter for them, I guess. 
“DNA is located in the cell nucleus.  It consists of two long polymers of simple units called nucleotides it is referred to as a base pair.  When you have a trisome it means that there are 3 polymers not 2 and a monosome means there is only one polymer.  DNA can be damaged by many sorts of mutagens, which change the DNA sequence.”Wikipedia  The 7 and 8 refers to which pair in the DNA Strand that has mutated.
The DNA that is being referred to is her blood cell DNA not DNA you would find in your hair or skin.  If that were the case a monosome 7 DNA would be someone with down-syndrome.
Part of the delay in finding this out is that they were not able to do cytogenetic testing on Mary before the last bone marrow biopsy.  Blood from the bone marrow is required to do the test and there was not any present on the first 2 biopsies or enough on the third to do the test. This was because of the fibrosis (scar tissue) in the marrow.  As I was doing a Google search I found that Chemotherapy can cause the mutation but so can other factors in both cases.  So we may never know if it was the Chemo that caused Mary’s DNA mutation.
Visitation – I checked with the BMT unit and there are currently no restrictions (age limits) on visitors but there can be no more than 7 people in the room at one time.  If you have any of the following please do not visit since it could be life threatening for Mary: Fever, Cough, Runny Nose, Congestion, Sore Throat, anything that you can get an immunization for (chicken pox/mumps/measles, etc…).  Once this is all over she will have to get all new immunizations since she will no longer have antibodies for them.
Donor Information – Mary has 2 donors:
1.      Female/Texas/dob 5/10/2010 (2 day after Mary’s birth date this year) O+ blood
2.      Male/New York/dob 4/18/2007 A+ blood
We will be able to tell which of the donors grafted by what her blood type changes to.  She will be able to meet them after 1 year in remission.  What a great Christmas present for her next year.
Love Deb