Austin P. - Quilt Finished in 2004

Born: March 4, 1998

Illness: Amegakaryocytic Thrombocytopenia

A Thank You From Austin's Family!

The quilt was a wonderful surprise for Austin.  It is a beautiful piece of artwork and example of talented people and their ability to love a child.  My child. Thank you so much for sending it to him.  May God richly bless you for your thoughtfulness.           

BJ and Austin

Austin's Story

written by mom Bobbi Jean

In November 1999, when taking Austin, our 20 month old son, for an ear re-check to Pediatrics, I casually mentioned to our doctor that Austin seemed to be bruising easily. A CBC (blood count) was ordered and his platelets came back 26,000, The doctor felt this level might be an error, because the normal range for platelets is 150,000-400,000. We went to the hospital for another blood draw and his count came back 24,000 so we knew the original test had been correct.

The next week we were sent to Mission Memorial Hospital in Asheville to see the hematologist/oncologist there. They did a bone marrow biopsy and took a closer look at Austin's marrow. We traveled that 1½ hour drive each week, sometimes twice a week through the next August. Austin had 2 more bone marrow biopsies, was admitted to Mission because his kidneys and bladder started bleeding, and was misdiagnosed as having ITP (Idiopathic Thrombocytopenia Purpura). ITP is a platelet destruction problem and as time went on, it became evident that Austin's body was not destroying his platelets, he simply was not producing enough platelets. It became normal for Austin to have an iv stuck in his arm each week and be followed around by an IV pole holding a bag of platelets.

By August, Austin was not making platelets. I had to resign my position in July, working for a non-profit agency, because the hospital visits took up so much time. We were referred to Duke when Asheville could do no more for Austin. We met with Dr. Kurtzberg and her team all day and stayed an entire week for testing. Entrance to the bone marrow transplant unit was scheduled for December 10th, 2000, with pre-testing and central line placement scheduled prior. We left home on November 28th and traveled to Durham, NC to Duke.

At that time, Dr. Kurtzberg let us know that she had diagnosed Austin's condition as Amegakaryocytic Thrombocytopenia (AMT). From his most recent bone marrow biopsy and aspiration, his marrow showed no megakaryocytes, or the "Mother cells" which produce platelets. AMT is a very rare condition which, left untreated, may develop into Aplastic Anemia and then Leukemia. The only known treatment at this time is a cord blood transplant.

My husband left behind his full-time job to be with us. I don't know how I would have made it through without his support. Austin's central line placement had a few problems. The surgery, which was supposed to take 45 minutes, lasted several hours because his lung was punctured. We spent 3 days in Pediatric ICU with a machine helping him breathe and a tube in his side to help drain off the blood on his lungs. This "bump in the road" delayed entry to the unit until December 18th.

We got on the unit and began chemotherapy. It's very hard to watch (and assist) nurses give poison to your child. The first doses had to be given orally and Austin decided he didn't want to take it anymore and had a tube put down his nose which reached to his stomach. This way, the nurses could give him the chemo without holding his down. Nine days of chemo later, Austin was transplanted with cord blood, or the blood from an umbilical cord. Then we waited for the new cells to grow.

One of the drugs Austin had to take caused his fever to go up to 108°F and he had a seizure. We were sent back to PICU until they made sure there was no neurological damage and then came back to the unit to try a new medication. Each day we would check his white count to see if there was any growth. Finally, his white cells started to grow. My husband started taking part-time jobs in Durham to help pay for expenses.

One night, Austin was on so much pain medication that he was sleeping too deeply and stopped breathing. They immediately reduced his pain medication and his breathing normalized. We got off the unit on February 5th, 2001 and went to stay in our apartment in Durham. We returned to the hospital on March 1st, 2001 because Austin had a temperature of 104°F and a line infection. He had surgery to remove his lines and they implanted another line at the same time.

We were finally able to return home on August 31st, 2001. It was a blessed day! In October, Austin was very sick and needed hospitalization again. We were in the hospital and in hotels paid for by the Asheville hospital for a month.

Eventually, we got to come back home and everyday life began to take on a certain 'normal' rhythm. We went back to Asheville every 2 weeks for blood draws and to Duke every 3 months. Austin developed a post transplant condition called hemolytic anemia. It was highly ironic that his entire problem was his platelets and now that those were fixed, another part of his blood was messed up. His 'old' red blood cells were attacking and killing off the new cells. So his body was making many, many more red cells than normal to compensate. He still couldn't be around more than 5 people at a time for fear of infection--infection that could at the very least, put him in the hospital...at the most, end his life. Even when we traveled to the hospital, Austin wasn't allowed to go into any gas stations to use the bathroom or even go into a restaurant.

2002 was a good year with no overnight hospital stays. Austin still fought the hemolytic anemia, but his hemoglobin stabilized around 10. I stayed home with Austin and we had good days together. My husband tried working a full-time job, but his employer soon tired of my husband's leaving whenever a medical need arose with Austin. So, we soon found ourselves depending on odd jobs to get us by again. But the Lord always provides.

2003 saw us visiting the hospital quite frequently for overnight stays, usually with unexplained fevers. Austin's hemoglobin stayed stable, so they allowed us to wean his steroid medication (at .1 per week). On September 6th, Austin took his last dose of steroids. His long term use of them caused cataracts in his eyes and some osteoporosis. They are hoping that his eyes will not worsen and that his bones will repair themselves as he ages. The big news for the year was that Austin started school. It took a lot of prayer to arrive at the decision that starting school was the best thing for him. Until the day before, he had only been allowed to be around 5 people at a time. Austin started coming down with every cold to come through town, of course.

In February, 2004 our other son Cole became ill. His tonsils began to swell. After many tests, he was diagnosed with Acute Lymphoblastic Leukemia. A new journey, a new fight.

Austin is now in third grade and looks like a ‘normal’ child, although he will proudly show his ‘bullet wounds’ to anyone who wants to see (his scars from his various surgeries). He still has cataracts from his past steroid use, but they aren’t growing at this time. We return to Duke about every six months for bloodwork and they monitor him fairly closely from afar (they are almost 4 hours away). If he plays for more than 1 hour daily, then the weakness in his joints (also caused by the long-term steroid use) cause him pain at night. He has some eczema in his scalp that we assume is transplant related, but an oil they have prescribed seems to be controlling that.

Austin is a straight A student and loves life. But while we look forward to many new days ahead, we never forget the path behind us. We stand with Austin in his fight and continue to be grateful that God has blessed us with our son's life. We will continue to take this one day at a time and be grateful for these precious days with him.

Thank you for your many prayers.