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!

Experiencing God in Unexpected Places

Madeleine’s Blog

May 26, 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

This morning, Madeleine had the opportunity to speak at "The Cove" (Covenant Fellowship) here in Santa Rosa. She was one of three youth speakers at the Sunday morning service that honored youth and graduates. This speaking opportunity was set up some time ago...it just happened to come a few days after learning the results of her latest scan. 

As you will see, God has given Madeleine a genuineness, along with the ability to share some of the grace from God that she has experienced during this past year. I don't think I would be overstating it to say that her talk touched everyone in the room.

Click on the picture below (or on this link) to hear her share about "Experiencing God in Unexpected Places":

Scan Results

Madeleine’s Blog

May 25, 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

From Madeleine:

Today I received the news of my most recent CT scan. However, it was not at all what I wanted to hear. The tumor (or spot of cancer ) in my liver has grown. 

I have mixed feelings about the news. I am happy the cancer has not spread other places, yet I am beyond frustrated that I am once more faced with bad news. So Tuesday, I will meet with the melanoma specialist at UCSF and discuss the next step of treatment. 

I owe a big thank you to everyone who has been there supporting me throughout this battle and reminding me to keep my head up and keep fighting. I will not let this cancer beat me! ♥

There is no doubt about it - we are disappointed. But it is also amazing to see the resilience in Madeleine even just hours after receiving this news. Thank you for the encouragement we have already received from so many people. Every word, and every prayer means so much. Now, we need wisdom to know the best steps forward. As always, thank you for your prayers.

Scans tomorrow

Madeleine’s Blog

May 21, 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

From Madeleine:

Tomorrow I will be having my first CT scan since February.

The purpose of this scan is to see if the clinical trial is working and if it has had any effect on my cancer. Please keep me in your thoughts and prayers tomorrow...

"The Lord himself goes before you 

and will be with you:

He will never leave you or forsake you.

Do not be afraid;

Do not be discouraged."

Deuteronomy 38:1

♥

Madeleine with brother Max and friends

Thank you for your prayers for Madeleine. These last 12 weeks since we began this treatment have gone very well for her. She finished up her fourth dose of the anti-PD1 a few weeks ago and has continued to feel great, with very minimal side effects. So, she has been enjoying life and making plans for summer. Based on previous experience, it can take several days for us to hear results back on the scans.

Please keep her (and the whole family) in your prayers as we wait for results. Madeleine has her next infusion appointment down at UCSF in a week.

anti-PD1 number 3

Madeleine’s Blog

April 17, 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 being brave at UCSF with her "You Can Do It" cup!

Thankfully, even in the midst of this battle with cancer, there are some blessed seasons where the threat of cancer (and the hassles of treatment) seem just a little further from your conscious mind. These past weeks have been those kinds of times.

Madeleine has been really doing well with this treatment and is having very few side effects. She was able to enjoy another trip down to San Diego and continues to appreciate life - even the simple things have more value because of the challenges she continues to face.

Patiently waiting at UCSF for an exam

Yesterday, Madeleine went down to UCSF for her third infusion of anti-PD1.  It was a long wait at the clinic this time - such a long time in the waiting room that her dad sent her a text joking that UCSF must stand for "U Can Sit Forever." :)

Finally, she was able to get her infusion done just before closing time. To avoid the traffic, she and her mom decided to stop and do a little post-infusion "shop therapy" in Corte Madera on the way home. So happy that she feels good enough to enjoy that!

In three weeks, Madeleine will have her next infusion of the drug. Then, in the middle of May she will have scans that let us know what effect the anti-PD1 is having on the cancer.

Thank you all again for your prayers! Madeleine has been feeling really good, and has been able to be active and enjoy life. We are definitely grateful!