Thursday, June 13, 2013

The Diagnostic Rollercoaster...

Abby had a bone marrow biopsy two days ago...

The Dr called today.

It wasn't exactly the news we wanted to hear.

Feeling kind of wiped out.
Emotionally drained.
Teary.

The U of Mn still feels that it may be MDS- Myelodysplastic Anemia. Which means Leukemia is in her future. Which means the only way to help her is a bone marrow transplant...
BMT's are tough... really really tough on the child and on the family.
It's even harder on a child that has lived in China during transfusions and her organs have been overloaded with iron. Even though we work hard to take the iron out(once the kids are home) there still is residual damage.
If her diagnosis is MDS she will have to have a BMT (bone marrow transplant)
The success rate 70%.
The younger the child the better.

The have requested that her bone marrow once again be sent to Boston Children's to be re- evaluated. It was Boston that diagnosed it as CSA- Congenitol Siderblastic Anemia six months ago.
Even then it was inconclusive.

They have not been able to find a genetic link to Abby's condition. They are trying again at Boston. That will help to better understand what they are dealing with and the more information we can get the better care plan we can have for Abby.
Each time they take a bone marrow sample- they get a different grouping of cells. This time they found more cells that looked dysplastic.

Even if her diagnosis is CSA there is a possibility it could turn into Leukemia but the chances are less than if it is MDS.

This is where Thalasemia is different than what Abby has...
Thalasemia does not turn into leukemia...
Confusing... I know...

The good news is Abby does not have to wear her backpack anymore!
She only has to take the oral medication daily for now!
And have transfusions every 3 weeks.

Our prayers are 
that her diagnosis is CSA and not MDS.

Please pray that they find a 6 out of 6 point match for her.
The better the match the more likely it is to be successful.

Thank you so much...

19 comments:

Stephanie M said...

Oh Jean, We will be praying!!!

Jboo said...

So sorry to read this -- praying for you all.

janet

snekcip said...

Lifting Abby and your family in prayer.

aunt jackie said...

praying with a mothers heart from florida ..
jackie

Kelly said...

My heart is aching and joining you in prayer...

Vicky said...

I join you in praying for Abbey and a match! I pray that God will give you wisdom and strength as you wait for the reply from Boston and as you consider treatment options.

Kay @ Slightly 0bsessed said...

My thoughts and prayers are with your family and Abbey. Abbey is very lucky to have such a loving, caring and amazing mother.

Emily said...

Prayers for your sweet girl, and big hugs to you, Jean.

Pam

Sally-Girl! said...

Storming the gates for you my dear friend!!!

Judy Deaton said...

Praying! for wisdom, and ultimately for healing! May God bless you and guide you.

Loved the tooth fairy post as well!

Karin said...

Oh Jean... I am so sorry. You know I am a big fan of Boston. I will be praying that they can give you an accurate diagnosis. They see SO MANY kids there. Kids from 3rd world countries who have not gotten treatment as early as they would here in the US. They are much more experienced with out-of-the-box medical situations. I would trust them more than the U of MN.

likeschocolate said...

Hope they find some answers soon! Keeping her in my prayers!

Sammie said...

I know this has to be very hard, especially since you had just felt comfortable with holding off on doing a transplant and now you get this news. Sending lots of love and support.

Annie said...

Just prayed my sweet friend!

Learning Together at Home said...

Praying for you all. Praying for healing and for best next steps.

Holly said...

Oh, Jean... I hope it's a comfort to you to remember that God already knows all about it and has it all under control. Praying for you!

Hanna said...

Praying...

BethFlanders said...

There will be a match if she needs one. Arizona was blessed with your calling and God has a plan for her life. So glad your Huainan girl is softneing...both of mine are the most stubborn and willful, but also the smartest of our bunch. God bless you and your husband. He is truly a blessed dad and one that deserves breakfast in bed or your family version of giving back. We have many hand made items waiting for our dad and all 6 kids will be here for dinner. Thank you for being such a wonderful mom and kuddos to dad of the year!

excitedtobeafamily said...

Praying!