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Old Thu Jun 17, 2010, 11:54 AM
CDChilds CDChilds is offline
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Join Date: Jun 2010
Location: Lorena, Texas
Posts: 10
Quote:
Originally Posted by theprodigy001 View Post
hello,

we where supposed to start the treatment a few days ago but she became sick. so they gave her meds and she is getting better slowly.we are shooting for Monday to start the treatment.
i am so worried.but talking to you is easing my fears a little.its nice to talk to someone who went threw this.
i have some more questions.sorry

how long after he stopped the cyclosporine the 1rst time did he relapse?
and was there a reason he did relapse, like did he get sick or exposed to something.how long has he been on the cyclosporine the second time?
Gage did really well after his first ATG(H). The only remarkable thing that happened was his platelets became low the second week we came home. We had to go back for a platelet tranfusion. After that his counts steadly went up over a period of 6 months (almost normal). They started winging him off his meds into the third month of being home and he came off all meds within the first 6 months. After that they declined a little but they remained very stable for over 2 years. Then we saw a trend of ups and downs for another 6 months or so but nothing life threatening. Then another 3 months past and they begin to decline to were we became concerned again. His white counts became pretty low so they removed him from school for a short time and put him back on his meds. At this point we felt the he was comming out of remission. His counts rebounded a little but not enough to were we were happy. So then we started talking about another round of ATG for the summer of 2008.

As far as Gage getting sick. He's never sick with the exception of a cold or allergies. Before his first round of ATG he was always sick and we were always in the doctors office with respitory infections, earaches, and viruses. To this day he hardly every gets sick. It actually amazes me.

After his second round of ATG (R) in summer of 2008 his count came back up to almost normal, however he stayed on all his meds for about 6 months. With the exception of his cyclosporine. He is currently still on a very, very, small dose, .1ml twice daily.

We went to see Dr. Bowman (Hemotolgist) today for a visit and we discussed removing him off cyclosprine in the up comming weeks. Gage is only taking a very small dose .1 ml twice a day and he doubted that it really had any effect on him. When he is removed completely from the cyclosporine we will watch and see if he remains stable. If he does at that point it will just be a watch and wait period. If his counts remain stable then we will just keep doing what we are doing. If Gage's counts start to drop then Dr. Bowman thought we should consider another round of ATG(h). Gage does not have a good BMT, or stem cell match right now so this would be our course of action.

I want to tell you something that may seem a little crazy but my husband and I tried it. My other two children did not match Gage for a BMT. So we decided to see if I could get pregnant with a match. We tried 4 times with the help of IVF because my tubes were tied after he was born. This is done through IVF because its pretty technical. I went on fertility drugs and made lots of eggs. They would set a time to pull the eggs and then they would fertilize them with my husbands sperm. Then on day 4 or 5 they would pull one cell from each egg and look for Gage's HLA typing. This is done through "Pregenetics Determination" We actually had a perfect match but my body rejected the egg after it was placed back in my uterus. We tried three more times without any luck. However, at the time that we did this I was 44 years old and the chances were very slim but we still wanted to try everything possible. Some people think this is trying to make a designer baby however if I had a made a match we could have used the baby imbilical cord blood for his BMT. The sucess rate is a lot higher if you have a matched sibling. Also we were told that cord blood actually is better than stem cells from bone marrow unrelated donor because it has not fully matured and setting up house keeping in Gages marrow would have been more excepting. Less side effects, less GVHD. However, cord blood takes a little longer to ingraft to his marrow but we were told that the out come is better. My husband and I decided to only try four times. We had to put a number on it because a person can get so wrapped up in the whole IVF process. It was very emotional for me because of all the hormones they had me on. But it was a decision I'm glad that we tried.

Some people frown on the attempt that we made with the IVF. However, I always wanted a really large family and If I had become pregnant with his match, I not only would have another child to love and care for but I would also have a chance to better Gage's quality of life.

The things that mothers will do for there children...

I find that every AA case is different so what I'm telling you is our experience. Your daughter may have one round of ATG and remain in remission for the rest of her life. Its possible.

CDChilds
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CDChilds, mother of Gage age 12; he was diagnosed with AA at the age of 3 yrs, 2001; treated with twice with ATG; currently on cyclosporine.
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