Friday, February 13, 2009

Finally... a Mercy Update

We finally got the results of the MRI, and a plan settled for this next stage of Mercy's treatments. First - the good news! The anomalies within her brain (some vascular issues, and the hemangioma) have not changed at all in the last six months. This is GOOD!

However, the outside hemangiomas have grown again. Dr. Adams has reconsidered the situation and decided that she wants to do the propanalol instead of chemotherapy. This is for several reasons... most to do with the risk of infection in a central line. Mercy has been on prednisone for two years now, and therefore has a suppressed immune system. With all the children in the family, Dr. Adams was concerned with the extra illnesses which might be brought into the family. She is also concerned with the amount of time it would take us to get to a larger hospital (2 hours or more) if she starts to run a fever.

So with looking at those things, she feels it is better to do the propanalol. She has developed a protocol to use in a study of this, and even though Mercy will be in before the study starts, she wants to use it with her. So we will be entering the hospital on Feb. 23 for three days. They will start with another echocardiogram to be sure that her heart is still fine for this. Then they will start her on the propanalol, increasing it 1 mg/ kg a day for three days... monitoring and watching her all the time. This will make sure that her heart continues to do well. There is also a risk of asymptomatic blood sugar problems, resulting in comas, so we are going to be tracking the blood sugar too as we are increasing the dosage. If all goes well we will be home on the 25th, and using the propanalol.

The photos I see of babies using propanalol for hemangiomas are incredible. The hemangioma reduces in size immediately! It is unknown if it will continue to stay small after we wean off the propanalol, or if it will grow back again, but it is worth a try.

So that is where we stand... sorry for making everyone wait to get the results. I wanted to make sure we knew what we were doing before posting it.

Have a happy day and a great weekend!

3 comments:

  1. Carri,
    Praying for you and Eric, glad there is a plan in place..I will continue to pray for Mercy, she is such a blessing, I know God has a awsome plan for her!!

    Maria

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  2. Just wanted to offer a word of encouragement...my son (2 in May) has a hemangioma on his nose that we started treating with propranolol in November through UC Davis Medical Center. The results have been nothing short of amazing. Yes, he still has a deformed and discolored nose that will require surgery, but nearly all the blood has drained away from the skin's surface and I would say the total size is down 50% maybe. Even our closest friends and family are telling us every day how much better it looks. Good luck!! ~Lesley (lesleyjtaylor@gmail.com)

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