Audrey update

[Spagg]

My daughter has been diagnosed with an extremely rare blood disorder (only 600-700 people worldwide). They determined this from the bone marrow sample they took a couple of weeks ago. Her bone marrow doesn't produce enough red blood cells. It is called Diamond Blackfan Anemia. The only for sure cure is a bone marrow transplant. A few have gone into spontaneous remission, so of course we are praying Audrey will as well.The other ways to manage it are monthly blood transfusions or low dose steroid medication (the steroids only work for roughly 25% of individuals with this condition).  Each of these has complications Audrey will have to deal with potentially for the rest of her life.

I have been extremely stressed out and depressed lately. Thanks to everyone for your prayers and thoughts in the past. I humbly ask that you keep Audrey in mind when praying and sending good thoughts in the future. Audrey, Julie (my wife) and I greatly appreciate all of them.

I will post again with any further updates.

Scott

[joshuaslater]

Well I'm hoping for the transplant.  How do they test you to know if you're a possible donor??

[Archer]

Well I'm hoping for the transplant.  How do they test you to know if you're a possible donor??

Ditto.

[MadBrad]

I will certainly keep you all in my thoughts.  Will hope for remission, and total recovery.  

As for you feeling down, it is to be expected.  Still, try to keep looking on the bright side.  It sounds as if your daughter's condition is treatable, and might even be curable.  

Easy for me to say, right?  

Keep it together, and keep focusing the positives you can find...

[Spagg]

Well I'm hoping for the transplant.  How do they test you to know if you're a possible donor??

i believe it is a blood test. Since Audrey is too young for the procedure right now, the doctor hasn't gone into a lot of detail. I'll let you know as soon as I do.

Wedge, do you know if it is a blood test to determine if the marrow is a match?

Scott

[joshuaslater]

We'll do whatever we can.  You hang in there, and take some time to spend with just the wife, if possible.  It's a lot to digest, but you can do it.

[dmcgee1]

I am O-Positive.  I know that that has to match, first.  Then, familiy is next best suitable match.  Thereafter, there is a registry, I believe.

[Coldthunder]

I feel for you brother, I had to deal with a similar situation.  No matter what anybody says the grass is greener on the other side.  It's getting to the other side that is the problem.  Just remember God loves you and prayer works, sometimes the answer is no.  As far as the blood tests they will try to get as close as possible to the type and various other considerations i.e. genetics. Family is where they usually start testing first.  Keeping you in my prayers and praying for a yes.

[Wedge]

Spagg,

Yes.  There are blood tests that can be drawn to determine bone marrow candidacy.  Your physician should refer you to a local lab that can set that up.  The blood is then sent to the National Bone Marrow Donor Registry to keep as a permanent record.  However, it can be done locally for family that specifically want to donate to other family members.  I am a member of the registry but have never been called to donate.  I almost did once--someone else lived closer.  Ask your doctor--he/she will point you in the right direction.

I am sorry to hear about the diagnosis (never hear of that Anemia), but the good news is it is treatable and you know your child will live through it even if there is some degree of difficulty assoiciated with it.  My prayers were answered because I had been praying that it wasn't Luekemia or Thalessemia.

As for feeling down and stressed.  I can empathize with you my friend.  When I found out my youngest daughter was a special needs child I was devastated.  I blamed God for letting it happen.  I was angry.  I lost my way.

However, I came to accept my child's condition and I see her in a completely different way.  My faith has never been stronger and I thank God every day for having Casey in my life.  When I think about all the other things that COULD be wrong with my child I am thankful for what I have.  Yes, my child is mentally retarded... but she is a beautiful happy child who I adore immensely.

Keep in mind the things that are positive about Audrey and remember that God only puts us through trials and tribulations that will make us stronger.  I will continue to pray for you, Julie and Audrey.

[Spagg]

Thank you all very much for your words of encouragement, support and information. Audrey's blood type is o+ which is a plus because it is very common. I'll let you all know if we get to the point the doctors are recommending a marrow transplant. I know first they want to see if the steroids work (in a couple of months).

Scott

[Wedge]

A little information on donor compatability:

When it comes to donating blood/blood products compatibility relies specifically on the antibodies in the serum of the recipient.  Here is a quick synopsis of what types can donate to which other blood types

Recipient          Donor
A                     A or O
B                     B or O
AB                   A, B, AB, or O
O                    O

Then we bring in the Rhesus factor (named after the Rhesus monkey that this testing was originally performed on) or more commonly called the Rh factor which is either positive or negative.

If you are Rh negative, you can (should) only receive Rh negative blood.  If you are Rh positive, you can received Rh positive or negative blood.  Through a little deduction you can reason that the best blood type to have and be a recipient is AB Pos.  You can receive blood from anyone without out risk of a Hemolytic Transfusion Reaction (HTR).  The best blood to have as a donor would be O Neg since your blood type has no antigen (H-substance) to stimulate an antibody response from the recipients blood.

There are exceptions and other limiting factors but that would take too long to get into and not worth the discussion here.  In Audrey's case she could accept blood/marrow donations only from O pos and O neg blood types.  But with Bone Marrow there are a lot of other low incidence antigens and CcDEe antigens that are present and would need to be tested for.  That's why it is not always as simple as blood type compatibility.  Also, rest easy in knowing that O pos and A pos are the two most common blood types, so there will be plenty donors to test from.  I am A pos and would be no good for Audrey, but I would donate if I could.

[warzoneD]

So sorry for your suffering, and the suffering of your daughter.  I will continue to keep you all in my thoughts and prayers of course. 

[Topkick]

Trust me my brother it's not all stress and depression - if you feel a squeezing senastion that his God and his angels passing on the hugs I asked him to give you. For you and yours I offer my continued prayers, my love and my marrow if compatible. Best advice I can give is cry when/if you need to...it in no way makes you less of a man - In fact it proves your true strength. Whatever you need, whenever you need it. You got my number - it rings 24/7 so use it whenever you need to.

[Petru5]

I'm A+, so I'm not any help for a future donor, but my thoughts and best wishes go out to you and yours.

[luckyone]

You and your family are in our thoughts and prayers.