jmmlfoundation2005
Dylan
Dylan was born April 6, 2004. He was 5 lbs., 7 oz. and 19 inches. He had a pretty normal couple of months. He developed irritation. The doctors did a WBC and turns out they had gone sky high.
Further tests were run and come to find out Dylan had JMML. I was taken back. Felt as if it was a dream hoping it would just end. I felt my heart stop as I looked into his eyes you see I lost my sister in 2002 to cancer. So I wasn't really understanding why this was happening all over again and why me. I thought to myself I take care of him and I love him and this happens when I'm a good mother. I didn't deserve this and neither did my Dylan.
Well he had his spleen removed shortly after we got this news. CVLs tubes placed. We then went for a plan of treatment which was a stem cell transplant. It was preformed at Duke medical school (fine fine hospital).. A few days before Dylan was to begin the steps to his stem cell transplant he developed RSV! WHAT A SET BACK! It was hell to be honest like there wasn''t any hope for us. THEN he started to develop red raised marks... Umm yeah more setbacks.
Then he had to radiology and received a couple treatments. After a few weeks of pushing it back it was time to go even though it was even more risky with him had having RSV. One of the doctors told me it wasn't looking that good. So he asked me and his father what we wanted to do. We went ahead and crossed our fingers and did the transplant. He stated intense chemotherapy. My poor baby got hives really bad from the ATG. Then March 2, 2005 he got his doner stem cell transplant. I was so scared. I was confused. I was heartbroken.
So now it was a waiting game for cells to grow. Indeed they grew BUT they were Dylan not the donor. I was in such shock. The doctors were really not sure what was going to happen... They thought he might need another transplant. They just wanted to wait and see just how soon it would be needed. I could do nothing but cry and just feel so so sad for Dylan. I use to pray begging to trade places. I would have walked off the end of the world to see him live. So then we went home just so wait and see wait and see.
Well it's been 3 years post transplant. Dylan could not be doing better. He will be 4 in April of this year (2008). He didn't have another transplant or anything else but medication when sick. He as bone marrow test done twice a year. We also have to go down to Duke once a year for a check-up. Every time they see his. They are speechless. They just say something like "well I can't explain it" . He is doing SO SO great. I owe it all to the doctors nurses and anyone else involved in Dylan care at CHKD (Norfolk, VA). Also Duke hospital (Durham, NC). First and most God. Prayers came north and south east and west.
That is my story of my special Dylan.
Phyllis
March 2008
Dylan
Dylan was born April 6, 2004. He was 5 lbs., 7 oz. and 19 inches. He had a pretty normal couple of months. He developed irritation. The doctors did a WBC and turns out they had gone sky high.
Further tests were run and come to find out Dylan had JMML. I was taken back. Felt as if it was a dream hoping it would just end. I felt my heart stop as I looked into his eyes you see I lost my sister in 2002 to cancer. So I wasn't really understanding why this was happening all over again and why me. I thought to myself I take care of him and I love him and this happens when I'm a good mother. I didn't deserve this and neither did my Dylan.
Well he had his spleen removed shortly after we got this news. CVLs tubes placed. We then went for a plan of treatment which was a stem cell transplant. It was preformed at Duke medical school (fine fine hospital).. A few days before Dylan was to begin the steps to his stem cell transplant he developed RSV! WHAT A SET BACK! It was hell to be honest like there wasn''t any hope for us. THEN he started to develop red raised marks... Umm yeah more setbacks.
Then he had to radiology and received a couple treatments. After a few weeks of pushing it back it was time to go even though it was even more risky with him had having RSV. One of the doctors told me it wasn't looking that good. So he asked me and his father what we wanted to do. We went ahead and crossed our fingers and did the transplant. He stated intense chemotherapy. My poor baby got hives really bad from the ATG. Then March 2, 2005 he got his doner stem cell transplant. I was so scared. I was confused. I was heartbroken.
So now it was a waiting game for cells to grow. Indeed they grew BUT they were Dylan not the donor. I was in such shock. The doctors were really not sure what was going to happen... They thought he might need another transplant. They just wanted to wait and see just how soon it would be needed. I could do nothing but cry and just feel so so sad for Dylan. I use to pray begging to trade places. I would have walked off the end of the world to see him live. So then we went home just so wait and see wait and see.
Well it's been 3 years post transplant. Dylan could not be doing better. He will be 4 in April of this year (2008). He didn't have another transplant or anything else but medication when sick. He as bone marrow test done twice a year. We also have to go down to Duke once a year for a check-up. Every time they see his. They are speechless. They just say something like "well I can't explain it" . He is doing SO SO great. I owe it all to the doctors nurses and anyone else involved in Dylan care at CHKD (Norfolk, VA). Also Duke hospital (Durham, NC). First and most God. Prayers came north and south east and west.
That is my story of my special Dylan.
Phyllis
March 2008