Chemo drug #1 - Check!

Madeleine’s Blog

August 24, 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 had a rough couple of days dealing with side-effects from the chemotherapy. She is on two different drugs (cytoxin and fludarabine) in order to suppress her immune system in preparation for the TIL cells that will be infused on Thursday.

Fortunately, she has now made it through the drug that has the worst side effects. She has also finished the three evenings of Penguin Cold Caps. The Penguin caps required some extra energy, and a very cold scalp (!), but in a way, they were also a good distraction.

Madeleine is pretty tired and weak right now, and may receive some red blood cells tomorrow to help out. (This is an expected part of the typical TIL therapy process.) The doctors and nurses here monitor her side effects and keep a close eye on all her counts, and she is being given several medications to help make the side effects more tolerable.

Madeleine went into this treatment knowing that this fight would be like a marathon, where you need to keep pushing through the symptoms and enduring until the treatment is completed. When you come to the end of your own personal strength, you have to rely on strength from God, and strength that comes through the prayers and encouragement of the people around you. We are so grateful for those of you who are at home, or in other places, who are pulling for Madeleine.

Please continue to pray that Madeleine would have peace during this time, and that God would grant her endurance, strength, and periods of rest during this battle. Thank you!

"Penguin Cold Cap" - Check!

Madeleine’s Blog

August 23, 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

With Penguin Cold Cap before chemo

Madeleine made it through her first night of treatment. Her chemo started at around 6 pm, and she has been doing fairly well with it. She is experiencing the nausea and its expected "results," and has been very tired, but is also distracted by all the activity associated with her "Penguin Cold Caps."

You may be wondering what a "Penguin Cold Cap" is, and you wouldn't be alone!

Let me try to explain. The chemo that Madeleine is having typically results in complete hair loss. When she made the decision to do this treatment, that was one of the side effects that she planned on. 

But then, she met another patient, Jackie, at NIH (who was a few weeks ahead of her in the same treatment) who had researched and then used these Penguin Cold Caps during treatment and had not lost her hair. Jackie, along with her husband and sister, helped make it possible for Madeleine to have the same opportunity.

With the last Penguin Cap - wearing gloves to assist

This is how the caps work: The intense cold (-32 degrees) from the cap reduces blood flow to your scalp, which makes it hard for the chemo to get in and harm your hair follicles. Because Madeleine is receiving chemo in order to reduce the immune system (and not directly to fight melanoma tumors) there is not the same concern about less of it reaching the hair follicle areas. 

Deanne had to arrange for lots of dry ice to be on hand in order to keep the 8 rotated Penguin Caps constantly at the right temperature (thank you, Jamie - a local, previous TIL patient). She also needed to have some large ice chests, and an infra-red thermometer to check the temperature before applying each cap (thank you, Jackie!). And finally, Deanne had to have lots of organization and concentration in order to change the Penguin Caps every 20-30 minutes for about 4+ hours. Both Deanne and Madeleine were exhausted by the end of the night...but happy that they were able to do it.

Madeleine says that there was an initial "brain freeze" but that you adjust after a while. In a way, having the Penguin caps helped give her a short-term goal (and lots of distraction), and those of you who know Madeleine, know that she loves to have a goal.  

Everybody is resting up today, getting ready for the same process tonight. Thanks for your prayers!

Support & encouragement

Madeleine’s Blog

August 22, 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

As I write, Madeleine is getting ready to start the chemo in just a short while. We have heard from several people asking for an address for Madeleine while she is in the hospital, and also about what they can do to help support the family. Thank you for that! 

Here is Madeleine's hospital address for the next few weeks (anticipated discharge date is September 12) :

Hospital room at NIH

10 Center Drive
CRC Building 10
3NW Adult Oncology, Room 1624
Attn: Madeleine B.
Bethesda MD 20892

Several of you have also asked about the need for financial support. We are very fortunate to have Madeleine's treatment covered so well by Kaiser Permanente and by NIH. There are many patients in other situations who do not have that privilege, and so we are very grateful.

That being said, there are costs associated that are not covered (flights for family members to be with her, time away from work, taxis, hotels, etc.). And those costs are expected to be ongoing because of frequent required follow-up visits. Because of this, a concerned friend from the Cove church has set up a support site for Madeleine and her family, which can be accessed here or from the sidebar.

Thank you to those of you who have already helped the family in so many ways - with meals, cards, encouragement, and prayer. There is something about the support of community that helps carry you through times like these.

Central line - check!

Madeleine’s Blog

August 21, 2013

Central line surgical placement done!

Thanking God for "twilight" anesthesia  :)

Now in recovery...

Tomorrow the week of chemo begins... 

Thank you for your prayers!

Full-on into the battle!

Madeleine’s Blog

August 20, 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

Deanne & Madeleine flew to Maryland again on Monday - this time for the TIL treatment that we have been waiting for. Can't believe the time has finally arrived.

Checking out the new hospital bed!

Looking back, our very first consult with NIH was in mid-June; Madeleine's major liver surgery was in the beginning of July; the extended recovery (and growth of the TIL cells harvested from her liver tumor) took up the rest of July and the first part of August; and finally, here we are today. 

There have been more scans and tests than you could ever imagine...or want to go through. But in the process, we have faith that this treatment will help bring healing to Madeleine and, also, that the information gained from all these tests will help provide valuable information to the researchers as they work to help even more patients down the road.

This week, Madeleine heads full-on into the battle once again. 

Tomorrow, they will surgically place a central catheter up by her neck so that her IV medication and blood tests can be administered.

Then on Thursday begins the 5 days of heavy-duty chemotherapy that will bring her immune system and blood counts down to "zero." This isn't done to directly fight the cancer, but rather to keep her immune system from fighting the precious TIL cells that will be infused one week later. Along with the TIL cells, she will also be given high-dose IL-2 for several days. Finally, she is expected to be discharged from the hospital on September 12th after her counts come back to normal.

Please pray for Madeleine during this time - especially for her emotional and physical strength. The treatment ahead typically has some pretty challenging side effects. And it is followed by long days of being "cooped up" in the hospital without family and friends.

Deanne and Madeleine have already been really touched by some of the people at NIH who have reached out to them. This includes nurses, patients who are in different phases of the same treatment, family of those patients, and (most recently) a former NIH melanoma patient who lives near NIH and came over with a welcome basket and lots of encouragement for Madeleine. These people have already been such a bright spot during this stay at the hospital, and we're really grateful for them.

Enjoying "freedom"

Madeleine’s Blog

August 13, 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

Go Giants!!! Madeleine and friend, Kaila

As the time to go back to NIH approaches, Madeleine has been enjoying her freedom. She has been getting time with friends, and right now she is up at Mt. Lassen with extended family for a few days.

Then on August 19th, she will fly back to NIH to begin her chemotherapy, TIL infusion, and high dose IL-2. This will involve an intensive 3-week stay in the hospital. Being "shut in" for three weeks will be hard for someone as active as Madeleine, so this is all the more reason for her to enjoy her freedom now!

Many of you have asked how you can help Madeleine and her family. There is a group of people from "The Cove" church who are organizing some meals during the next few weeks to help take some of the load off the family during this season. After spending so much time out of state, and also away from work, it would be very meaningful to know that meals are being taken care of a few times each week.

If you would like to help in this way, please contact Kirsten Carpenter at 707-548-3460 or by email at kcarpenter618@sbcglobal.net and she can put you on the schedule.

Thank you to The Cove and to all of you for your prayers and support during this time.

Officially accepted into the TIL trial!

Madeleine’s Blog

August 2, 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 finally made it through all the scans, and then had a meeting with the doctors at NIH about her case today.

Scans are done, trial is decided = Relief!

The scans show that the spot in her spleen has grown a little; there is some "activity" in her lymph nodes (but they don't appear larger); her brain MRI was clear; and there are no new areas of melanoma (!). Dr. Rosenberg and the other doctors also explained how the cells NIH has been growing for her (taken previously from her liver) appear to be very active and growing on schedule - which is also very good news - and will be ready to use in her treatment by mid-August. 

Then Dr. Rosenberg let Madeleine know that she was randomized into the non-radiation part of the trial. This means that she will have a much less complicated treatment, with an easier recovery, for which Madeleine was very grateful!! (Because doing full-body radiation is never taken lightly, I think we were all relieved - doctors included - that Madeleine is not going to have to do the extra radiation.) This decision also means that Madeleine gets to come back home to Santa Rosa tomorrow instead of staying on for another week of treatment now. :)

So, she is scheduled to start full-on TIL-therapy treatment there at NIH on August 19th and will be in the hospital there for three weeks. More on that as the time approaches.

Thank you for all your prayers and encouragement!