Scan marathon begun, drain gone!

Madeleine’s Blog

July 31, 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 and Deanne arrived at NIH yesterday, and then started off this morning with an ultrasound IV placement, followed by a CT scan. Then later, Madeleine finally got to have the last drain taken out that had been placed after her liver surgery several weeks ago! :)

Tomorrow morning, a 1.5 hour MRI session is planned, and then around 1 pm (East Coast time) NIH will make the official (random) decision on which arm of the TIL trial she is to be in. Please be praying for everything surrounding that decision.

From Madeleine's Facebook page a little while ago:

"Today I had my CT scan. Tomorrow I will be having a brain and liver MRI which I am really not looking forward to. Then in the afternoon I will officially sign the consent for the trial. At that time I will find out if I will be receiving the full body radiation or not.

I have to trust that this is in God's hands, and I will be put in the side of the trial that is best for me. Please keep me in your thoughts and prayers. Thanks."

Deanne and Madeleine have been amazed at the connections they have already made with other melanoma patients who are receiving the same therapy there at NIH. What a blessing to have people who are already in different parts of the trial, and who are so willing to offer encouragement and support.

We have heard from so many of you who are praying - thank you for your concern and encouragement!

To NIH we go - final pre-trial scans & decisions

Madeleine’s Blog

July 29, 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 some time between treatments :)

We just got the word from NIH this morning: Madeleine has recovered enough to go back and start the next phase of treatment.

So, tomorrow morning at 8 am, we will be flying out to Maryland to do all the updated scans, sign the forms, and be randomized into the TIL trial.

She will report to NIH on Wednesday morning for a long list of baseline scans: PET scan, ultrasound-guided IV, blood tests, EKG, chest x-ray, MRI, and she will finally get the drain out that was put in after her liver surgery. Those tests will be read, and if all looks ready to go, then she will sign the authorization form and be "randomized" into the TIL trial there at NIH.

The randomization will be to see if she will be in the side of the trial that has full body radiation or not (both sides of the trial get two kinds of chemo plus high dose IL-2). The radiation side of the trial has more potential side effects, but also appears to be giving a higher rate of response to the therapy.

After the randomization decision, the plans are for her to fly back home on Friday. But if she is in the radiation side of the trial, then she will need to stay a few more days for shots and other kinds of preparation for therapy before coming home. One thing we are learning with this treatment is that our airline flights are always sort of "penciled in" - open to needing to reschedule at the last minute as the need arises.  :)

Please keep Madeleine in your prayers during this intensive week. Join us in praying that she would have grace to make it through all the tests and scans; that she would be officially qualified for the TIL trial; and that she would be randomized into the side of the treatment that would be best for her treatment and complete healing. Thank you, everyone.

Recovery at home

Madeleine’s Blog

July 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

On the shuttle, headed for home at last!

Madeleine has been home recovering since Tuesday :) Both she and her mom were so excited to be heading for home after the long, unanticipated stay at NIH. During the last part of Madeleine's hospital time, she was able to receive occasional "passes" to go outside the NIH hospital complex for some shopping and meals, but there's just no place like home!

Almost two weeks after her surgery, Madeleine's doctors made the decision to release her with one of the drains still in place, so that she could fly home and recover there while the fluid drainage gradually decreased each day. (This problem happens in about 20 percent of cases because of the extensive nature of this type of surgery, and its potential affect on several of the bile ducts that come off the liver.) So, the plan is to have the drain removed here in Santa Rosa when it is no longer needed, let her heal up for a few days after that, and then she'll go back to NIH for extensive baseline scans and the news about which part of the TIL trial she will be in.  

Flexibility is definitely needed when dealing with this type of situation! Fortunately, she has had excellent care so far at NIH, and we are blessed to have lots of specialists working on Madeleine's case to problem-solve situations like this and come up with the best treatment options for her. 

This is from Madeleine's Facebook page:

"Never give up hope."

"Before I went in for surgery, my dad pulled out his phone and showed me a picture of the horse shoe necklace I wanted. He smiled and told me he'd get it for me.

My parents mean so much to me. They try their hardest to do what they can to make me happy and help me overcome every challenge I'm faced with. As the card says, "Never give up hope." 

Now, every day I wear this necklace, I will remember to never give up even when I feel like I can't make it. Love you, daddy."

Madeleine

Extended stay at NIH :)

Madeleine’s Blog

July 11, 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

Healing up better now :)

When we last left off, Madeleine appeared to be on her way to healing up fine. But as the days progressed, her pain began to worsen. The doctors first ordered an ultrasound and then a CT scan, which revealed a buildup of fluid in her abdomen near the surgery site. The out-of-place fluid was pressing on nerves and other internal structures, and causing her a lot of pain.

So, yesterday, they took Madeleine in for a little more surgery to put two drains into her abdomen. The doctors removed a quart of the fluid and are leaving the drains in place until the situation is remedied as things heal. Apparently, the fluid is "bile" and this post-operative problem is not uncommon with this kind of surgery.

Madeleine definitely seems to be a lot more comfortable since the drains have been put in, so hopefully she can now really get on with her recovery. They are planning to take out the drains and her central line in the next few days.

NIH clothes-drying rack

In the meantime, this means that Deanne & Madeleine weren't able to come back home on Monday as was originally planned. They are not exactly sure which day they'll be able to come home, but it might be on the weekend sometime.

Staying longer means clean clothes are needed...so fortunately, NIH has on-site washers and dryers for families. However, when the clothes aren't quite dry at the end of the cycle, Deanne has found a way to finish the job (see adjacent picture).

During these days at NIH, Deanne and Madeleine have been able to meet other patients who are in varying stages of the same treatment, and it has been really helpful to hear their stories and learn from those who are further ahead in the treatment process.

Thank you again for your prayers and encouragement. 

Surgery recovery - slow but sure!

Madeleine’s Blog

July 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 has been slowly recovering from her liver surgery during these past few days, with her mom and dad by her side.

Ever since the surgery, she has had an epidural in place in order to help manage the pain because they needed to limit the amount of medication in her bloodstream until it was safer for her liver to process. But now, the epidural is out, and most all of her other "attachments" are gone...so she is definitely feeling much more "free"!  :) 

Looking at this picture, you would never guess the major surgery she had been through just five days ago, and you can't really see what she has been through during the recovery process (let's just say it hasn't been easy!). But things are looking up now, and she is aiming to come home on Thursday. In the meantime, she's now eating solid food, and is up "gingerly" walking in order to help the recovery process along. Thank goodness for pain meds!

NIH hospital breakfast menu

We really have a lot to be grateful for because the surgery went so well, and the care here has been excellent. In addition to the expertise in regards to melanoma patient care, there are some little touches that help make things nicer from a patient perspective. For instance, once you're cleared to eat, you are able to order from a hospital menu and the meals are cooked-to-order and delivered in 45 minutes (I heard that the blueberry pancakes actually tasted like home made!). It is little touches like these that mean a lot. 

In addition, there is good support available for the families of patients, including on-campus housing and a cafeteria with a lot of selection. Since David and Deanne have been tag-teaming in order to always have at least one person with Madeleine, it really helps to have this kind of support available on-site.

In the meantime, the doctors are working on growing the "TIL" cells that will fight Madeleine's cancer. We should know in a few weeks how the cells are growing. Thank you for your prayers: for Madeleine's full recovery, for the cancer to be stopped, for the TIL cells to grow, and for wisdom for the decisions ahead. Thank you, everyone.

Liver surgery done!

Madeleine’s Blog

July 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

Madeleine's NIH "home" for the next week

This morning, Madeleine had major surgery at NIH to remove the softball-sized tumor that had been growing in the middle of her liver. We just received word that the surgery was successful, and that Madeleine is beginning her recovery there in the ICU. The doctors and nurses (and her parents) are keeping a close eye on her, but thank you for keeping her in your prayers during this time! 

The doctors have let Madeleine know that recovery from the surgery will take some time even though she is young and healthy. Fortunately there is an on-site lodge for patient families, which will enable her parents to be there with her.

Madeleine and her folks have been in Maryland since Monday. They spent yesterday meeting with the doctor in charge of her clinical trial, as well as the surgeon in charge of today's liver surgery. Both of these doctors are very impressive in regard to their level of training and experience with melanoma, and that helps put your mind at ease. 

Madeleine's latest scans had revealed continued growth in her liver tumor, as well as a few additional lymph nodes. But her doctors have also expressed that "something" has been holding back the cancer from spreading - and for that we are very grateful. Because a tumor is needed for the TIL therapy, the liver tumor was chosen. (Sometimes they are able to do liver surgery laparoscopically, but that wasn't possible in this case because of the size and location of the tumor.) We are really glad the liver tumor was chosen, and glad that it is out of there!

The researchers at NIH have already taken the tumor from Madeleine's surgery and are beginning the painstaking process of growing the TIL cells that she will need to help fight her cancer. 

Please join us in praying for Madeleine's safe and timely recovery from surgery; that the cells collected today will be able to be used for her successful treatment; and that God would continue to hold back the cancer in her body as she recovers and waits for her cells to grow into billions. Thank you.