Hot rod Gabs preparing for the Indy 500.
God has been great and we had an enjoyable summer, which is partially why we haven't had much time to update the site. The problem with taking this long in between posts is there is so much to write. I will try to do a condensed version.
Just before summer we put Gabs on Accutane, we were not totally comfortable with it, but our doctor felt strongly about putting her on. The treatment is two weeks on two weeks off for 6 months. There is a short novel describing all the side effects of this drug, it is primarily used to treat severe acne. I actually took it when I was a teenager...probably explains a lot of things (lol). The biggest problem with Accutane is the lack of testing done on children. There had been no studies done on anyone under the age of 12 and the concentration prescribed for our 2 year old was 6 times greater than the prescribed dose for a young adult. Gabs took two months of Accutane before we pulled her off as she became very emotional and introverted (depression and crying are side effects). There was also a newly released study that indicated toddlers on Accutane were at risk of stunted growth because of early bone plate closure.
In light of this we felt the unknown risks did not outweigh the suspected potential benefits for her scenario. In addition, there is little evidence to support that 6 months of treatment is too much or too little, it was an arbitrary number that was used when initial testing of the drug was done. All that being said, we do believe that Accutane may have helped Gabs in the two months she was on it and hopefully taking 2 months as opposed to 6 months greatly decreased her potential side effects.
Over to the MRI; we received an e-mail on 6/1/2011 indicating they found two small residual tumors about the size of a pea that were missed during surgery. These were probably what were responsible for her HVA numbers rising. This news was a little discouraging. As we continued to research, we found that sometimes these residual tumors can just sit there and not do anything. Some may actually convert from malignant to benign nerve cells. So this is what we have been praying for.
Just before summer we put Gabs on Accutane, we were not totally comfortable with it, but our doctor felt strongly about putting her on. The treatment is two weeks on two weeks off for 6 months. There is a short novel describing all the side effects of this drug, it is primarily used to treat severe acne. I actually took it when I was a teenager...probably explains a lot of things (lol). The biggest problem with Accutane is the lack of testing done on children. There had been no studies done on anyone under the age of 12 and the concentration prescribed for our 2 year old was 6 times greater than the prescribed dose for a young adult. Gabs took two months of Accutane before we pulled her off as she became very emotional and introverted (depression and crying are side effects). There was also a newly released study that indicated toddlers on Accutane were at risk of stunted growth because of early bone plate closure.
In light of this we felt the unknown risks did not outweigh the suspected potential benefits for her scenario. In addition, there is little evidence to support that 6 months of treatment is too much or too little, it was an arbitrary number that was used when initial testing of the drug was done. All that being said, we do believe that Accutane may have helped Gabs in the two months she was on it and hopefully taking 2 months as opposed to 6 months greatly decreased her potential side effects.
Over to the MRI; we received an e-mail on 6/1/2011 indicating they found two small residual tumors about the size of a pea that were missed during surgery. These were probably what were responsible for her HVA numbers rising. This news was a little discouraging. As we continued to research, we found that sometimes these residual tumors can just sit there and not do anything. Some may actually convert from malignant to benign nerve cells. So this is what we have been praying for.
Over the summer Gabs monthly HVA and VMA have remained stable and actually come down a little. There was a sharp decrease in Gabs HVA number after being on the Accutane, our doctor seems to think it may have treated some of her neuroblastoma.
Gabrielle just had her second MRI scan last week. She was so amazingly brave. She sat on my lap while they poked the needle in her hand to find a vein. I was shocked that Gabs remained calm while she watched. Sadly they had to push the needle back and forth about 15 times trying to get in her little vein. She remained stoic until about the 10th back and forth, when she slowly and quietly started to whimper. She never pulled her hand back and never belted out a loud cry she just sat there bravely and try to hold it in. Once they were done, she immediately stopped crying and was back to her goofy self. Yesterday we received the results of Gabrielle's second MRI scan and everything seems to continue to be stable. So this means the residual tumor does not appear to be growing, and no new tumors have appeared.
We thank God daily for his hand in all of our decisions and paths we have taken. We have another VMA HVA test tomorrow and we are hoping for continued good news. Gabs has been doing great all summer, she has been running, playing, talking up a storm, and doing all the things that children her age are suppose to be doing. We have been on a zoo tour this summer, visiting Binder Zoo in Kalamazoo, Detroit Zoo, John Ball Zoo in GR, Potter Park Zoo in Lansing, and the Racine Zoo in Racine, WI. We will try to be a little more consistent with posts in the future. Thanks for all your prayers and support.
We thank God daily for his hand in all of our decisions and paths we have taken. We have another VMA HVA test tomorrow and we are hoping for continued good news. Gabs has been doing great all summer, she has been running, playing, talking up a storm, and doing all the things that children her age are suppose to be doing. We have been on a zoo tour this summer, visiting Binder Zoo in Kalamazoo, Detroit Zoo, John Ball Zoo in GR, Potter Park Zoo in Lansing, and the Racine Zoo in Racine, WI. We will try to be a little more consistent with posts in the future. Thanks for all your prayers and support.