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My Story

Along the path to diagnosis
A Journal By Victoria Frank

Where do I begin?

Well, I have undergone numerous tests for the past 18 months due to low platelet counts, red blood cell levels and white blood cell levels. Specialists at Bellin Cancer Treatment Center & Froedtert Cancer Treatment Center have made a diagnosis of Aplastic Anemia, and the treatment plan includes a bone marrow transplant. God has blessed me with two bone marrow matches, my brother, Nicholas, and my sister, Melissa.

God Bless! Please read the background story to fully understand this all!

Background Story

It all began when I was about three months pregnant for my second child, Hunter. A complete blood count test (CBC) came back abnormal, and an accidentally-run B-12 test revealed low B-12 levels. At that time, I wasn't in the danger zone, but there was cause for my doctor to monitor me closely. I was due December 25, 2008.

Second Trimester

As my due date came closer, my blood levels (red, white and platelet counts) fell to a dangerous level. We were sent to see a hematologist and a high risk pregnancy doctor.

Third Trimester

My blood levels were so low that the hematologist put me on a steroid to help bring the levels up. This did not work, and sent Hunter into distress.

On December 2nd at 10 AM, just 23 days from my due date, the high-risk OBGYN was unable to detect kicking or any movement. A stress test and full profile was immediately conducted. There was still no movement and no kicking, and his breathing was barely detectable but he was still hanging in there.

Early Delivery

We were sent up to the birth center to have our little boy! I went through two transfusions of red blood cells & platelets before he was even born. (I also could not take any medication what so ever because it would affect my platelet count, so this would be all natural!!! The doctors were able to get my red blood cell counts and platelet counts up to a comfortable level to induce me and start labor!

December 3, 2008 - Baby Hunter Born

On December 3, 2008 in the very early morning, Hunter was born. Thank God! He was small, but healthy!

Red, White & Platelet Counts Continue To Decline

Before we left the hospital on December 5th I was given one more transfusion. I was given 2 more transfusions to get my levels up after he was born! The transfusions did not take, and my levels kept falling (basically, my bone marrow was failing to produce enough cells to keep up with the natural death of cells in my body, and my immune system was attacking my blood).

My hematologist doctor kept checking me and everything was looking good! My levels had fallen some, but my hemotologist was not concerned; he felt that my body would correct itself. But something told me to double check, and double check.

So, I took it upon my self to call Bellin Cancer Team and set up an appointment! Thank God I did! I love my doctor so much, she is the best!!!! She, too, thought everything was looking good, but then my levels fell on my 2nd appointment with her! So the testing started. Nothing found! More testing. Nothing found! Finally we went in for a bone marrow biopsy on September 9 2009. The hematologist expected to find Leukemia, MDS (pre-Leukemia) or maybe Aplastic Anemia.

God Bless! Victoria

Preliminary diagnosis

On September 10, 2009, two pieces of vital information learned from the bone marrow biopsy were revealed. 1st - it wasn't Leukemia! Amen! 2nd - the bone marrow at the place where they conducted the biopsy was showing 1% cellularity, which means, in short, that my bone marrow was only producing 1% of the blood cells that my body required. Normally, the bone marrow of a person at 22 years of age would show an 80% cellularity.

Referred to Bone Marrow Transplant Specialist

I was referred to a bone marrow transplant specialist at Froedtert for further evaluation, and informed that I would likely need a bone marrow transplant.

Diagnosis

After nearly 50 more tests, and a second bone marrow biopsy in which the doctor was able to aspirate a quantity of bone marrow, and subsequent consultations with six other specialists in the field, a working diagnosis was formed.

On October 13, 2009, I was diagnosed with Aplastic Anemia.

Aplastic Anemia is the failure of the bone marrow to produce blood cells. The production failure is caused by the destruction of blood stem cells in the bone marrow. It has long been thought that the destruction of blood stem cells is due to an attack of the immune system upon one's one bone marrow. As the blood stem cells deminish, less blood cells are able to be produced. Blood cells go through a natural life cycle; red blood cells remain in the body for about 90-120 days, while white blood cells remain for only 72 hours. The bone marrow typically produces new blood cells to replenish the body just in time as the old cells' lives end. However, in aplastic bone marrow, the bone marrow becomes aplastic, and the blood stem cells are unable to produce new blood cells. Consequently, a deficiency of blood cells occurs, and because new cells are not being created, the deficiency becomes more critical.

Twenty years ago, aplastic anemia was unable to be corrected; today however there are two primary forms of treatments. A bone marrow transplant, with its associated chemotherapy to eliminate the immune system, and irradiation to eliminate remaining bone marrow prior to transplant of blood stem cells can for all purposes cure aplastic anemia.

See Understanding Aplastic Anemia