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Welcome to Steven's Web Page

Steven and Fritz Together at Last

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Steven's Journey with Aplastic Anemia

Steven was born on May 22, 1994. From the first moment I looked at him, I new God sent me an angel. He is a very warm, loving and playful boy. He has a "Love for Life" attitude, that I believe has gotten him through the obstacles that have been given to him thus far. His strength has given us strength to face each obstacle with a positive attitude. He touches everyone that meets him, and leaves a lasting impression. I thank God daily for giving me such a wonderful boy, and am very thankful that I haven't had to go back to work since he was born. Everyday we spend with Steven is a special gift from God and we believe that even more since Steven's illness.

Steven was admitted to UCLA on May 4, 1996 for low blood counts and bruising. Two Bone Marrow Biopsy's later, he was diagnosed with Severe Aplastic Anemia on May 23, 1996, the day after his 2nd birthday. He started Drug Therapy on May 24th, 1996, and was released from UCLA on June 6th 1996. By the grace of God, he responded to drug therapy at the end of July 1996. He was off all medicines for 6 months then he relapsed at the end of September 1997. On December 23, 1997 he had a Matched Unrelated (MUD) Bone Marrow Transplant.

Events Leading Up To Diagnoses

Prior to the diagnoses, he was constantly getting sick. His doctor kept saying it was a virus. Between January 1996 through the time we were admitted to UCLA on May 4th 1996, we had taken him to the doctors at least 11 times for various colds. During that time, we had asked the doctor to run a blood test on Steven, as we felt something wasn't right with his immune system, for him to be getting sick all the time. I am an at home mom, so Steven was never around a lot of kids. The doctor refused, he said there was no reason for a blood test and that Steven was perfectly healthy. There was just a lot of viruses going around.

Then in the middle of April 1996, we noticed a lot of bruising. I called the doctor as I thought maybe Steven was iron deficient. He told me not to worry, that Steven was an "almost 2 yr old active boy" and they get bruises. On May 3rd, when I was changing his diaper, I noticed purple dots on his stomach. I thought it was a rash of some sort and took Steven in to see the nurse practitioner. She put the bruising and petechiae together and ordered a blood test. Within 12 hours we were at UCLA. And our nightmare began.

Waiting For Answers

Steven was admitted to UCLA on May 4th 1996. They ran blood tests and immediately transfused him with red cells and platelets as his counts were too low. They did a bone marrow biopsy and aspiration the following day. The results from the aspiration, made the doctors initially think Steven had Leukemia. When the Biopsy came back a few days later, they felt differently. The Biopsy showed that his marrow was 80% empty, but 20% had cells producing "healthy" cells. They thought it was probably a virus that knocked down the marrow, but did not close the idea of it possibly being Aplastic Anemia. They said we would wait and see how his counts went. Well the following week they did another Bone Marrow Biospsy and aspiration, as Steven's counts continued to drop and he continued needing transfusions. The aspiration came back that his marrow was empty. They pulled up no cells. So again, we had to wait for the biopsy results. Thanks to the lab cutting the marrow the wrong way, it took a little longer for the results to come back. May 23 1996, the day after his 2nd birthday, they had the results they needed to diagnose Steven with Severe Aplastic Anemia.

Drug Therapy

While the doctors were checking the registy for a bone marrow match, they started him on drug therapy. Which consisted of 4 days of ATG, cyclosporine and Prednisone. The doctors didn't think he would respond to the drug therapy, as his marrow was empty. There were no 6 out of 6 Bone marrow matches on any of the registries, but there was one 5 out of 6 Cord Blood match. They were doing the final testing on the Cord Blood so they could start to prepare Steven for transplant when he miraculously started to respond to the drug therapy. He was on Prednisone for a month and a half, and cyclosporine for a year. Once off cyclosporine for 3 months, Steven relapsed.

Brief time off all medicine

His last transfusion of blood products after the initial drug therapy, was July 27, 1996. At that point his marrow was producing blood cells and he no longer required any transfusions. He was being tapered off the Prednisone while we were still in UCLA. He was off the Prednisone by the end of June 1996. The cyclosporine he was on for 6 months, then they started a slow taper, which took about another 6 months.

Steven's relapse of Aplastic Anemia

We thought we were starting to see a light at the end of our tunnel, as Steven was doing very well off the medicine. For the first 6 months off the cyclosporine, his counts were doing well. Not quite normal, but in a safe area. Then his white count and platelets started to drop. The doctors, as well as us, were hoping it was just a virus that brought his counts down. As we were only going to clinic monthly at this time, we waited till the next visit to check his counts again. They were still dropping, so Steven's doctors scheduled another Bone Marrow Biopsy and aspiration for the following Tuesday. The results showed that his Aplastic Anemia was relapsing.

Search for a Bone Marrow Donor

The original search done from the registries, when Steven was first diagnosed on May 23, 1996, turned up only a 5 out of 6 "Cord Blood" Match. They were running all the tests and typing on the cord blood for the transplant when Steven started to respond to the drug therapy.

Before Steven relapsed, our daughter Serena was born. We stored her cord blood, just in case she matched and Steven needed it for a transplant. Of course, we hoped and prayed he never would.

When Steven relapsed, they ran all sorts of tests on Steven and Serena, and all their tests showed that Serena was a 5 out of 6 match. Our doctor, Doctor Marcus, was running one last test outside of UCLA, just to make sure she was a true 5 out of 6 match. (As I must make this point, Scott, my husband, and I are a 5 out of 6 match on the broad range test for one another, which is quite rare.) The day before we initially were to be admitted to prepare for the BMT using Serena's cord blood and some of her marrow, our Doctor called and informed us Serena was only a 3 out of 6 match. So our hopes were shattered again. Another obstacle put in our way of Getting Steven healthy.

Another search was done, and there were three 6 out of 6 matches. Two of them, backed out on any other testing. But the one that agreed to the further blood tests turned out to be a perfect match for Steven. The donor remained a 6 out of 6 match throughout all the testing and by the grace of God agreed to donate his/her marrow right before the holidays. The only thing that didn't match was the blood type. They figured changing Steven's blood type was a minor thing. Steven was born O+ but now is A+.

Meet My Bone Marrow Donor

Steven's Time at UCLA, before and after Transplant

UCLA PHOTOS

Steven at Home with sister and family

Family Photos

UPDATED 7-12-99

Outpatient Visits and Lab Work

Updated every 6 months

Last Update November 27, 2000

Our "Miracle Signs " from God.

How You Can Help


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I have adopted my very own Guardian Angel Bear. If you would like to adopt one, please click below.

Other Web Pages to Visit

Please visit my friends who also have Aplastic Anemia

Katelyn Rose Hubbell's Web Page

Andrew McBrides Family Web Page

Paige's Tale

Daffies Garden

Laura Bauer's Web Page

Beth's Place

Meet my New Friend with Acute Lymphoblastic Leukemia, Philadelphia Chromosome Positive

Travis Goldish

Thanks

We would like to thank our Doctor, Doctor Madeline Marcus, who has saved Steven's life a few times by going the extra step and researching things further. Like when she went the extra step and did an outside test on Serena and Steven, when the previous tests said Serena was a 5 out of 6 match. Other than just jumping in and using Steven's sister's Marrow, which would have probably killed him, as it turned out she was only a 3 out of 6 match. She is no longer with UCLA but is now with Childrens Hospital of Orange County. Our loss but their gain. We sure miss her!

We would also like to thank all the people who have been praying for us, and who continue praying, for all their support through this difficult time.

Thank you Bobby Hull and the BGF Prayer Group. Your prayers and gifts of healing are truly cherished and will always mean the world to us.

Thank you to St Patricks Episcopal Church. Your generosity and prayers have given our family more strength than you could ever know. You are our direct link to God. God Bless you all.

Thank you CountryWide Mortgage for your continued support and prayers. Your Get Well card/poster was beautiful. It Brightened Steven's days in the hospital room. We will keep that forever.

Thank you AA/MDS List server. Everyone going through this difficult time together and hearing everyone's stories, give us all strength and knowledge of these two Unknown Diseases. God bless Everyone of you on this list

We also want to thank Kevin Sherry with the Daily News for doing such an excellent job covering Steven's story, and keeping up on Steven's progress.

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Links to other sites on the Web

Aplastic Anemia Foundation
Guideposts

Children's Organ Transplant Association

1997 My2Angels@excite.com


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