IL-2 - Check!

Madeleine’s Blog

August 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

So glad to be heading this direction!

Whew! Madeleine has now finished her last dose of IL-2 and is ready to work on her recovery! She made it through 5 doses, but her lungs were beginning to get fluid in them, so it was time to stop. She is short of breath when she tries to get up, and is still experiencing several of the side effects from the medications she's received.

Now it's time to recover and get stronger again. The doctors expect that her counts will start to come back up some time around Thursday, and that should also help with how she feels. Her general "puffiness" from the IL-2 should begin to go away, as well as the redness of her skin and other lingering side effects.

We are just glad that she has made it safely through the treatment! The doctors are very pleased with how she did. It be will nice to be able to come home again, but that is still a way off. She is not scheduled to be ready to travel home until September 12th, which will mean a long time of recovery in the hospital.

Please continue to pray that the TIL cells she received would go after every cell of the melanoma, and that she would be completely healed.

IL-2...and some blessings

Madeleine’s Blog

August 30, 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 is currently on her 4th dose of high dose IL-2, but we just got word that she will delay the next dose until morning so that she can get a good night's rest. Last night was very tough with lots of side effects, but today has been a better day so far.

We know that with IL-2 things can change with each dose, so she is being carefully monitored before each new dose is given.

Feeling better between doses

(The maximum number of doses to get to is 15 doses, but if there are complications it is not uncommon to need to stop earlier than that.)

As Madeleine began to feel a little better as the day went on, today's mail was delivered. Among the items was a box from Tiffany & Co. It was sent to her from the woman who had helped Madeleine at Tiffany's when she was trying on things during one of her off-treatment times here in Bethesda. The box contained some special hand-made headbands, some pretty catalogs to look at, and a very nice necklace. It also had a special note of encouragement.

It continues to amaze us to be the recipients of so many people's kindness. Early on in this phase of treatment, we had someone volunteer to cover the cost for the dry ice needed for Madeleine's Penguin caps (not an insignificant amount) - and this was from a person who had never even met Madeleine personally!

There have also been people who have brought meals to our home to help keep some "normalcy" there while we have been here attending to Madeleine... People who have sent cards and notes of vital encouragement... People who are praying - some of whom we have never met, but who are helping us in a way that is unseen, but so necessary in this fight...People who have given to help practically and financially...wow!

So many have reached out to us with such a generosity of heart that it has amazed us (and at times brought tears to our eyes). In some of our most difficult hours, we have been blessed by this outpouring of support. Thank you.

TIL cells? Check!!!

Madeleine’s Blog

August 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

 

Ready for TIL cells

Today has been a very monumental day. It is the day we have aimed for, and hoped for all these many weeks.

Madeleine has been through so much to get here - flights, multiple scans, consultations, major surgery and recovery, more scans - that it was an emotional moment when the nurses brought in the precious bag of her TIL cells. 

101 billion TIL cells, that is!

This bag of cells only took about 20 minutes to be infused. But the potential contained in that little bag is amazing. Each of those 101,000,000,000 cells are now working their way through Madeleine's body - hunting down the melanoma cells on a "seek and destroy" mission.

TIL cells going in!

A few hours after these tumor fighting cells went in, Madeleine received her first infusion of high dose IL-2. This can cause some intense side effects, but so far things have been manageable and we are so thankful for that.

She will receive another dose of IL-2 every 8 hours as long as the doctors believe that her body is handling it well. The IL-2 is what the cells are grown in, and having it present in the bloodstream helps the little cells survive and fuels them for their mission.

So tonight, we are so grateful to have the TIL cells on board and doing their work. We know that Madeleine still has a lot ahead of her during the next days of IL-2 treatments, and then the additional days of recovery in the hospital.

Thank you for continuing to stand with us - for your concern and encouragement, and for your prayers.

A little break...and some encouragement!

Madeleine’s Blog

August 27, 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 made it through the first two chemo's, and is now in the "pause phase" while the doctors wait for her white cell counts to drop in preparation for her TIL cell infusion on Thursday. She feels a lot better right now, and was actually released to go on a brief visit outside the hospital today. It will be a while before she can do that again, so she took advantage of it!

She and her mom and dad went out to lunch at California Pizza Kitchen, and spent some time at the mall. In the past week, there have been many days that included very little sleep for everyone. But now they all have had some better rest and refreshment. Here are some pictures from today's trip to the mall:

Madeleine with pictures & cards from home

When Madeleine got back to her hospital room, there was mail that had arrived for her. She set right to work decorating the wall in her room with the pictures and cards that had come.

Among them were pictures of her family, brother Max, "adopted parents" Dave and Cindy, friend Kaila, and finally, her fellow melanoma warrior, Amanda Vaughan Salyer. (Amanda and Madeleine met while they were both doing Biochemo for melanoma down in Riverside. She was always one of Madeleine's biggest cheerleaders, and I imagine she is still cheering for her, now from heaven!). It is such an encouragement to look at this wall and feel all the support and love from family and friends.

There was also a little note from a very special nurse who has been a real encouragement to Madeleine at NIH. Her note reminds Madeleine that (as she looks ahead to the coming treatment) her attitude should be, "I can do this!!"

I know this wall of encouragement will continue to grow and expand each day as even more letters from home arrive. Thank you for all of your encouragement and prayers.

Doing a little better :)

Madeleine’s Blog

August 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

Madeleine has made it through the first "storm" of chemo side effects (which included all kinds of fun stuff that I won't elaborate on!).

Today, she was able to sit up, drink some lemonade, and even have a few bites to eat. Although the acute symptoms are much better, her underlying nausea is still present, as well as the fatigue and general malaise.

As expected, they gave her two bags of blood today to help bring up her low red blood cell counts. (The chemo takes down all her counts, but the doctors only need her white cells to be down for the TIL therapy. So, the red cells and platelets get replaced as needed.)

Blood in disguise ;)

We are really grateful for Madeleine's wonderful chemo-nurse, who is used to patients who feel uncomfortable about having to see all the blood.

The nurse made a real effort to camouflage the tube to Madeleine's port using the hospital's colorful self-adhesive wrap! She also camouflaged the bag of blood with a pillow case! :)

Madeleine is still receiving one of the chemo drugs through Monday. Then she will have two "pause days" for her white counts to go all the way down to where they want them.

Thursday will be the big day, when the TIL cells go in, and the high dose IL-2 begins.

Madeleine's parents are both there with her now, so that one can rest while the other is with Madeleine. Thank you for your prayers for Madeleine, and for her family.

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!