Heading to NIH - for liver surgery

Madeleine’s Blog

June 28, 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

Enjoying the time between treatments

Madeleine has now been accepted for one of the adoptive cell therapy (TIL) trials at the National Institutes of Health. At first, the consultation with NIH seemed like it was taking a long time...needing more information, additional scans, and testing on a previous biopsy. But now, the decision has been made, and treatment plans are moving fast!!

Madeleine will fly out to NIH on Monday, and is scheduled to have surgery on Wednesday to remove the entire tumor from her liver. This is a major surgery, but frankly, she will be glad to see the tumor go! It will then take almost a week of recovery until she flies back home.

This therapy is done in a few phases. The first part is removing one of your melanoma tumors (in Madeleine's case, her liver tumor). Right after the surgery, the doctors take your tumor and start the process of finding and growing your own cancer-fighting T-cells that are already present inside the tumor (but are outnumbered). Then they take those cells and grow them until there are billions of them, which will enable the cells to have a much better chance of fighting off your melanoma. This "growing" process takes 4-6 weeks and is very intensive and specialized - but they are now able to grow these cells with over 90% of patients.  

At Tahoe in June with friends, Dave and Cindy

Once you are recovered from surgery and your cells are ready, you go back to NIH for the next part of the treatment. That's when you undergo chemotherapy and other treatment (to prepare your body so that it doesn't shut down your new cells), and doctors give you back your own tumor-fighting cells, which are unleashed to fight your melanoma. 
 
We are really grateful that Madeleine has been accepted to begin this specialized treatment. Please pray for her as she goes through this surgery and recovery, and as she prepares for the next part of her treatment.

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.
 

Brain MRI clear :)

Madeleine’s Blog

June 8, 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

Madeleine's brain MRI was rescheduled to yesterday, and we got the news today: All clear!! Having a clear scan is always such a relief, so we are especially grateful for this.

What's next? Madeleine is scheduled to fly out to Maryland to the National Institutes of Health (NIH) for a consultation on Tuesday, June 18th with the melanoma specialist there. We are going there to see if she can be accepted for TIL (tumor infiltrating lymphocyte) therapy, also known as Adoptive Cell Therapy.

The NIH Clinical Center in Bethesda, Maryland, is actually the nation’s largest hospital devoted entirely to clinical research, and NIH researchers have pioneered this therapy, which has been around for several years. 

With TIL therapy, surgeons remove one or more of your melanoma tumors, and then you are sent home for several weeks. Meanwhile, in the laboratory, the scientists work to separate out your own cells (lymphocytes) that are inside the tumor attempting to fight the cancer. Those cells are then grown, multiplied (until there are billions of them), and tested in the laboratory. Then, you go back to the hospital, undergo chemotherapy and other treatment, and your own concentrated, tumor-fighting cells are reintroduced. It is a pretty rigorous treatment, but they have been having good results with it.
 
As always, we would really appreciate your prayers for wisdom and guidance as we make these decisions, and for Madeleine's healing. Thank you, everyone.

Consultations

Madeleine’s Blog

June 3, 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

We are playing the waiting game again...waiting for additional tests and consultations in order to figure out the best treatment option at this point.

We've been consulting with Dr. Daud (from UCSF), as well as with Madeleine's local oncologist (he has been a great help), and are in the process of sending records to a melanoma specialist at the National Cancer Institute in Bethesda, Maryland. Madeleine will be having an MRI this Wednesday, and after the oncologists have a chance to look at that, then we should be able to better know what the next step will be.

In the meantime, summer has arrived -- and we are grateful for it! Madeleine spent this past weekend watching friends graduate and attending graduation parties. She also has been busy working at the gym, and then she's getting ready to teach swimming lessons this summer.

We really appreciate your prayers for clear direction, for peace during this process, and then of course for Madeleine's healing. Thank you!