NIH consultation

Madeleine’s Blog

June 18, 2013

So do not fear, for I am with you

Do not be dismayed, for I am your God

I will strengthen you and help you

I will uphold you with my righteous right hand

Isaiah 41:10

NIH's Clinical Research Center in Bethesda, MD

Madeleine & her dad flew into Bethesda, Maryland yesterday for today's consultation appointment. As you can see from the adjacent picture, the NIH Clinical Research Center is a huge place! 

After receiving a picture ID name tag, Madeleine proceeded through the anticipated tests of the morning. Then came meetings with a social worker (who explained how the NIH program works), as well as several other doctors and research fellows (who asked questions, did exams, and explained what was involved in the clinical trials that Madeleine could potentially be a part of). 

Frankly, the whole process was a little overwhelming. There are three different Adoptive T-cell Therapy trials that are possibilities for her, and they all have their significant side effects and risks. But these aggressive treatments also offer a significant potential of a good response or even a complete response...and so the downsides have to be weighed against the hope of response. Nothing is guaranteed, of course, but there are a percentage of patients with metastatic melanoma who have had amazing, long-term responses and that is what we are hoping and praying for for Madeleine.

After the discussions with the doctors, it was determined that more scans would be needed, but that those could be done here in Santa Rosa. Also they need to find out some additional information to see which trial(s) she qualifies for. They told us that it looks like she has qualified for at least one of the trials - the additional info will help determine if there are other options as well. 

Having fun at Tiffany & Co.

At the end of this long day, Madeleine and David went out to PF Chang's, and Madeleine also had some fun trying on jewelry at Tiffany & Co. (When the going gets tough, the tough go shopping, you know!). 

As she said on Facebook, "My daddy sure knows how to cheer me up after a long, stressful day!" (:

Madeleine & David will fly home tomorrow morning, and then it will be time for more scans, discussions, and decisions. NIH said that they will try to get started on treatment as soon as possible.

What a great name for a cafe!

Thank you for your continued prayers and for all your concern and encouragement - it means a lot. Pray for wisdom and direction during this time of decision making. Thank you.