Remembering together

Madeleine’s Blog

December 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

It was a very moving day yesterday.

I am struggling to describe how it was, but I can tell you that I went away profoundly touched and impacted by what I saw and heard.

Right from the beginning of the service, we heard that this time was to be a celebration of Madeleine's life, and the effect of that life on all of us. Yes, there were tears. But there was so much more than that.

For now, I will just post the video slideshow that contains so many wonderful photos from Madeleine's life (set to music). Thank you to all of you who sent photos, many of which we were able to include in the following video...

Video Slideshow (click here)

In the upcoming days, I will update this page with more video taken from the service, including the sharing by her parents, coach Mark Stanley, and others.

Thank you again for joining with us yesterday. It was deeply touching to be surrounded by so many people who have been a part of our lives over the years.

Join with us on December 28th

Madeleine’s Blog

December 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

Thank you for all of your outpouring of support and love toward our family over these past few days. You have been such a blessing in so many ways.

We would love to have you join with us for a memorial service celebrating Madeleine's life:

Saturday, December 28th at 2:00 pm at Santa Rosa Bible Church (4575 Badger Rd, Santa Rosa). 

Between now and then, we are trying to collect  photographs of Madeleine for her family. Some of you may have pictures of Madeleine that her family has not seen, but would love to have. Perhaps you have pictures from swimming, or swim teaching, or the gym, etc. If so, please email your photo to thedanfordbontacoalition@gmail.com as an attachment along with any information about the photo that you have (who is pictured, date, etc). Thank you for your help with this.

The family has established a scholarship fund in Madeleine's name for the Montgomery High School swim team, which was one of Madeleine's passions. (Contributions can be sent to a special account set up for this purpose at the Redwood Credit Union, account #431887.) If desired, contributions can also be made to the Make A Wish Foundation - an organization that was a particular blessing to Madeleine and her family during her fight against cancer.

The obituary for Madeleine published in the Press Democrat on Sunday, December 22 may be viewed by clicking here.

One of the many things Madeleine brought to us through her battle is an appreciation for life, for family, and for all the good things that really do surround us - if we would only have eyes to see. May God comfort us in our loss, and grant us His grace during this Christmas season.

At peace

Madeleine’s Blog

December 15, 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 didn't know when today began that this would be the last day Madeleine would be with us. She was growing weaker - that was very evident. But she hung on to see a few visitors in the morning, and then had a visit from the nurse that lasted until after noon. A few minutes before 2 pm, surrounded by her family and at peace, she breathed her last.

While my heart would have chosen to keep her here, I know that she is now in a place where there is no more pain, fear, or disappointment. I know that she is with God, and that He is taking far better care of her than I ever could.

There is so much I could say about Madeleine and my admiration for her relentless pursuit of life in the midst of a battle she did not choose. Already the posts on Facebook and comments on this blog are saying more than I have the strength to write about tonight.

While I have observed first-hand the evil brought by this disease, I have also seen the mercy of God revealed in the goodness of our community, the kindness of friends and even strangers, and the strength of the love of family. I can only trust that as we go through the days ahead, this same mercy will surround us and help us through.

As always, thank you for your prayers for Madeleine and for her family. We so appreciate your expressions of love and care.

Signs of Christmas

Madeleine’s Blog

December 14, 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

Thank you for the outpouring of love we have received from everyone. We have had so many offers of practical help, along with gifts and food, and many of you have had an opportunity to come by to visit Madeleine and the family. The sense of love and support is palpable in this house. 

The house is beginning to look like Christmas, and Madeleine is surrounded by the signs of it. With the help of friends, our family tree (above, on the left) was decorated for us by Lani, and the stockings were hung. Madeleine's tree (on the right) is in view of her bed and was decorated by Amber, Devon, and Chelsea.

Madeleine is increasingly tired with all that she has to fight through physically, so we are moving into the phase of having to limit visits quite a bit more just to conserve her energy. (Calling - or texting - before a visit is a good idea, and be prepared that there may be times when we have to turn you away at the door - even though we would love to welcome you in.) Having said that, it is a blessing to have so many friends and well wishers.

Pictured to the right are just a few of the things that have been surrounding Madeleine... 

Snoopy dogs (one for each member of the family - from Lucy)...

Gorgeous flowers (from Ted)...

Miniature lit-up houses (that used to be displayed on the mantle when Madeleine's grandfather was a boy)...

A Christmas reindeer (from Shelby & Leesa)...

A little gingerbread house (from Sophie, whom Madeleine used to babysit)... 

And of course, Madeleine with Chloe. :)

There are many more things than can be displayed in these few pictures, and some of the most important can't be captured in a photograph. Thank you all for your prayers and kindness. We are all tired, but are so grateful to feel the support of friends.

Friends :)

Madeleine’s Blog

December 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

Yesterday was a tough day. Actually, each day is tough right now, but there are also some bright spots.

Friends and family (and even some of Madeleine's former teachers) have been stopping by to visit and express their love to Madeleine and her family. There are tears of love, as well as laughter over shared stories from the past, and lots of hugs all around.

Madeleine with her good friend, Ted

We are all tired, but we're also grateful today for friends, and for being surrounded by love and care.

Hard news - but surrounded by love

Madeleine’s Blog

December 10, 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 had her scans done yesterday afternoon, and the results came surprisingly quickly. Our local oncologist (Dr. Andersen) came by the house after he got off work to personally give Madeleine and her family the news. He sat on the edge of Madeleine's bed and uttered the words that we have for some time been hoping not to hear: that the cancer had spread significantly throughout her liver...that she has some small blood clots in her lungs that are causing her most recent breathing difficulties...that the most recent clinical trial drugs appeared to work only for a short time...and that there were no more treatment options available that would be helpful to Madeleine, especially in her weakened state. His recommendation was that we meet with Hospice in order to get the kind of assistance we will need in these coming days. All of this difficult news was delivered with genuine concern and tenderness - we have been through a lot with this doctor, and he has been so helpful every step of the way. 

When the doctor left, the reality of the news hit, and the crying together as a family began. It was actually a bittersweet time - with the bitterness of the reality of the depth of this pain, and yet at the same time there was a beauty in the depth of the love expressed between each member of the family. It is hard to describe, but I will never forget it. 

And so, we ask your prayers for Madeleine and for the family at this time. We made arrangements today to have help from Hospice in overseeing her care. In recent weeks, Madeleine has become significantly weaker and is now needing oxygen at times throughout the day. She is often uncomfortable, but not in significant pain at this point. She tires quite easily and so can only handle short visits, but has been blessed by people's expressions of love.

Chloe - making herself at home on Madeleine's bed :)

A special treat tonight:
Madeleine's friend, Devon, brought her tiny dog Chloe over to spend the night on Madeleine's bed and keep her company (at Madeleine's request). Hopefully, they will both get some good sleep tonight :)

Thank you again for your continued prayers, and thanks to those who have been bringing meals, sending notes, and helping to support the family during this time. 

Thanksgiving

Madeleine’s Blog

November 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

From Madeleine's Facebook on Thanksgiving:

Life is precious. Life isn't always easy. Life is beautiful. Life is amazing. We have so much to be thankful for in life...

Thanksgiving 2013

I've been through a lot during this past year. I am so incredibly thankful for the people in this picture, and many others. I don't know how I would make it through without them. God is good ♥

Showerheads & side effects

Madeleine’s Blog

November 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

Courtesy of "Monkey Wrench" plumbing

Sometimes it is amazing to think of all the people who have helped us during this time. We have definitely been the beneficiaries of so many people's kindness - too many stories to list, really. 

One example: This week, Deanne called a local plumber (someone she knew from teaching their children in years past) to come out to the house and put in a hand-held shower head for Madeleine and to fix some other faucets. (A shower head like this is wonderful for those who are battling cancer because you can direct the water away from chemotherapy "ports" and medication patches, etc.) When it came time to pay for the work, the man said, "No, why don't you just spend that money on your daughter instead?" and then he made his way out the door. Brings tears to my eyes. Such a practical blessing in the midst of this battle. Thank you to the family behind Monkey Wrench plumbing!

This week marks one month since Madeleine began the new clinical trial drugs that she takes daily. She has blood tests each week to monitor levels of everything imaginable in her blood. The tests show that some of her blood levels (ones that had risen dramatically just before she began the trial) are now heading slowly back down, dropping a little each week. This is encouraging, as well as the fact that she still is no longer needing pain medication for her tumors and only occasionally has a fever (instead of the nightly fevers she had before). We won't really be able to tell how things are doing until her scans in mid-December, but are thankful for the things that are heading in a better direction.

At UCSF this week, Dr. Daud was very helpful in helping come up with solutions for some of the side effects of the drugs that Madeleine has been experiencing. Since starting the new drugs, she has had to deal with rashes on her body and face from the medications. Now we have some topical cream to help with some of the worst of that. Probably one of the worst side effects is all the inflammation in her mouth, which has made it so difficult for her to eat. Dr. Daud also had medication ideas to help with that, and so we are hoping that Madeleine will be able to be a lot more comfortable soon. Dr. Daud said that the good news about the rash is that it is an indicator that her body is definitely absorbing the medication, but that it was time to deal with the side effects.

We also found out this week that Madeleine's melanoma is "NRAS," which is a mutation found in about 15-20% of people with melanoma (she has previously tested negative for Braf, and is also negative for c-KIT). To most of us, that just sounds like a bunch of alphabet soup! But to researchers, it helps to narrow the treatment focus a little. It is all very cutting edge stuff, but we are very fortunate to be involved in a clinical trial right here at UCSF that is working to target melanomas with that mutation.

Yesterday, it was time for another blood transfusion in order to help with Madeleine's low counts. At the Kaiser infusion center, the nurses are so kind and attentive to Madeleine (and Deanne) that it feels like you are sitting in a little oasis of TLC whenever you go there. Warm blankets, snacks, concern, and conversation help to make being there so much better. Getting the transfusion is a several-hour project, so that was the day's work yesterday! The good news is that Madeleine's red blood cell counts are dropping much slower than they were when she first started the medications, so we are glad for that. Hopefully having a little more hemoglobin will help with her energy level. That, and being able to eat a little better once the medication takes effect. 

As always, thank you so much for your continued prayers for Madeleine and her family.

Reflections on Make-A-Wish

Madeleine’s Blog

November 16, 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's Facebook today:

"Bat Kid" is the perfect example of what an amazing organization Make A Wish is and how giving our community can be. 

Make a Wish: Celebrating "Bat Kid"!

As Make A Wish says, 

Our mission: We grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength, and joy.

No, I do not know "Bat Kid" personally, but I know the joy and happiness that that little boy is feeling. Thank you to all the individuals who participated in making his wish come true.

I am forever grateful to Make A Wish for the experience they gave me, and all the ordinary people who gave their time and money to make my wish come true and give me greater determination and want to keep fighting. 

If you ever think about donating to help children with a life threatening illness, Make A Wish is the organization. You go, Bat Kid - keep up the fight!!"  
~ Madeleine

Madeleine - enjoying the fall weather today!

Keeping up the fight!

Madeleine’s Blog

November 15, 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

It has now been just over three weeks since Madeleine started on the new clinical trial drugs, and so it's definitely time for an update.... A little over a week ago, Madeleine's mom decided to take a temporary leave from her teaching job in order to stay home with Madeleine and help her get better.

Here is from Madeleine's Facebook:  

"My amazing mom - who has been so incredibly supportive - decided to take leave from work. I just wanted to say thank you mom for being there for me every day and comforting me when I feel sick."

On Deanne's last day of work, the teachers (and other employees from her school) surprised her with so many special things -- among them a gift basket for Madeleine filled with a special blankets, hats, booties, gift cards, and many other wonderful things. What a blessing -- those items have already been put to use!

Meanwhile, Madeleine has been taking the five "clinical trial" pills early every morning (which at times is hard to do on the required "empty stomach"), but she is managing to keep them down now.

It is hard to know how things are really going with the trial, but there are a few good things that we can see. About a week after she started the new pills, Madeleine decided that she no longer needed the round-the-clock pain medications that she had been taking for the abdominal pain from her tumors. Also, the nightly fevers that were related to the tumors have now disappeared. So those are some good changes that we see.

Probably the hardest thing for Madeleine, though, is how tired she feels and the lack of energy that she has. This is a huge lifestyle adjustment for her, but it is a part of her daily battle. She goes in for blood tests here at our local Kaiser fairly frequently in order to monitor her blood counts. Two weeks ago she received two units of blood, since her hemoglobin had gotten quite low, which helped some with her energy.

Last weekend, Madeleine was able to go up to the family cabin at Mt. Lassen to be with her great aunt and uncle and family for the annual "choosing and cutting" of the family Christmas trees. It was so restful to be at the cabin, and while Madeleine didn't have the energy to go out hunting for the tree, she did enjoy being there with family whom she loves, and in a place that she has always enjoyed.

Thank you for your prayers for Madeleine and her family. We are continuing to pray that she will be able to manage the side effects of this treatment, and that she would be completely healed. Thank you, everyone, for your support and concern.

Started new UCSF clinical trial

Madeleine’s Blog

October 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

Madeleine was accepted into the UCSF clinical trial on Wednesday, and began taking the new trial drugs on Thursday. She has to take them early in the morning, on an empty stomach, and so at first she was having quite a bit of difficulty (she could get the pills down...but they sure didn't want to stay down!). She seems to be doing better with this now - using her determination and an adjustment in her anti-nausea medications.

In general, Madeleine has been more tired and weak - which is really hard for someone who is so used to being active. Some of that is the result of needing to be on medications for pain, taking new medications, and having a reduced appetite - along with low hemoglobin. She is working to concentrate all her efforts into fighting cancer, keeping up her appetite, and trying to stay on top of the symptoms she is experiencing.

Last week, Madeleine received a nice package in the mail from her NIH doctor, Dr. Payabyab, along with a very kind note. Dr. Payabyab came out to San Francisco last weekend to run in the Nike Women's Marathon and was presented with a "finisher's necklace" from Tiffany & Co. at the end of the race, which she sent to Madeleine. What a blessing to receive such a nice note and gift. Dr. Payabyab has been very helpful in follow-up since Madeleine finished treatment at NIH - she has continued to respond to email questions, which has helped us bridge the gap while waiting to get started with this next treatment.

Lots of appointments this week! Today, we went down to UCSF for an exam, and then tomorrow we will be there again for an ultrasound-guided biopsy of her neck that is required by the trial (it wasn't possible to schedule both on the same day). Then Wednesday afternoon is an appointment with Madeleine's local oncologist, Dr. Andersen.

Please keep Madeleine and her family in your prayers - thank you so much for all of your support and concern.
 

Happy Birthday!

Madeleine’s Blog

October 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

Just a quick post to let you know that today is Madeleine's nineteenth birthday! :)

Here she is earlier this afternoon with her good friends, Dave and Cindy, who brought over some balloons to the house to help in the celebration!

(Madeleine's appointment with UCSF has now been set for Wednesday, October 23rd. Thank you for your continued prayers!)

Seeking out the next step

Madeleine’s Blog

October 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

This has been a hard week for us as things have shifted a bit, and Madeleine is having to deal with pain and daily fevers associated with the cancer. In the midst of this, we have been looking to find the best way to proceed in this ongoing battle. 

While we were at NIH, they recommended that we try a different angle of therapy for Madeleine, one which involves using some newer clinical trial drugs that are targeted at stopping the chain reaction involved in the growth of melanoma. These types of clinical trials are typically hard to find for someone whose melanoma tests "Braf negative" as Madeleine's does, so we are very fortunate that a trial for her melanoma type just opened in late September at UCSF.

Madeleine has spent the past week doing pre-trial testing, consulting with the melanoma specialist at UCSF, and also meeting with our local oncologist here in Santa Rosa.

"Never give up hope"

(Honestly, sometimes at UCSF it can seem a little rushed and impersonal, which makes it hard to come to a good decision - even though UCSF is also a source for some of the best treatment available for melanoma.) 

We are so grateful that Madeleine's local oncologist was able to make space to see her on Thursday, so that we could talk over the treatment decision with him and also get some help understanding how to deal with some of the pain and fevers that Madeleine has been experiencing during this past week or so. All of her doctors agree that the pain is from the growth of the liver and spleen tumors, and that the daily fevers are also a side effect of that growth as well. She is now on medication to help deal with the pain and fever.

On Thursday, if all goes as planned at her UCSF appointment, Madeleine will begin taking the two clinical trial drugs that are designed to help her as she continues this fight. She is definitely determined to keep fighting, and so appreciates all the encouragement she has received. She will need another biopsy around a week after she begins the treatment, and then will have scans in eight weeks to evaluate. 

Please continue to pray for Madeleine --- for her healing, for freedom from pain, and for strength for her and her family during this time. Thank you, everyone.

Hard news - but still fighting

Madeleine’s Blog

October 4, 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 received some difficult scan results at the end of the day yesterday. Madeleine's existing tumors have grown slightly, and there are two new tumors growing in her liver. 

As you would imagine, this news hit us like a ton of bricks, especially as we had all been really hopeful about this particular treatment. (We are familiar with several other metastatic melanoma patients for whom this treatment has been successful - some of them for several years now - but unfortunately, it was just not to be in our situation.)

Aboard the NIH shuttle

Madeleine was disappointed (and frustrated), but she also has an amazing ability to rebound, and a lot of determination to keep fighting. She and her mom went out tonight to relax and enjoy some dinner at California Pizza Kitchen. 

Tomorrow, they will fly back home and continue the hunt for a new treatment that will be a good match for Madeleine's situation (progress has already been made in that direction - more on that in an upcoming post).

We are actually very fortunate that there are several new treatments that have become available just in the past few years - for so long there were very few viable treatments available for metastatic melanoma patients.

Because of the scan results, our time at NIH has come to a close (as they believe it is in Madeleine's best interest to move on to something else). We have been treated well here, and even though it doesn't appear that the TIL therapy itself has worked, we are thankful that we were able to have the opportunity - especially as we hear on the news that NIH is unable to accept new patients right now because of the government shut down (!). We are also thankful that as a part of her TIL treatment, the doctors here removed that softball-sized tumor from Madeleine's liver, which continues to be an on-going benefit.

Thank you everyone for your continued prayers, support, and encouragement - especially as we look toward the next phase of this battle.

Bridesmaid :)

Madeleine’s Blog

September 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

Madeleine as a bridesmaid for her cousin

Can you believe that it has already been one month since Madeleine first began the chemo that prepared her for the introduction of her TIL cells? Wow - time flies by! 

She has been doing really well during this month of recovery. She asked me to say thank you to all of you for your cards and other support/encouragement while she was in the hospital.

One of Madeleine's main goals as she came back from NIH was to be able to participate as a bridesmaid in her cousin Katherine's wedding, which was on September 14th (just a few days after Madeleine came home from NIH). 

I am pleased to report that Madeleine did great at the wedding and was able to fully be involved in the whole celebration - including the rehearsal, the rehearsal dinner, and everything. It was amazing, and she looked gorgeous!

Here is what Madeleine wrote on her cousin Katherine's Facebook the day of the wedding:

"You are more than just a cousin to me. You are an inspiration, a role model, and basically my big sister. I don't know what I would do without you. You have always been there for me. We are family and nothing is stronger than family. I am so happy for you and Kevin. I love you. Congratulations!"

And her cousin responded:

"I love you Madeleine...thank you for being a part of our special day, that meant the world to me. Your description on this photo [above] totally made me cry. I love you with all my heart."

We are so grateful that Madeleine was able to be a part of the wedding and to stand alongside her cousin on such a special day. We thank God for moments like these.

Deanne, Madeleine, David, and Max at the wedding

Thank you to everyone for your continued prayers for Madeleine's complete healing. She goes back to NIH the first week of October for scans and tests in order to evaluate her progress.

Heading home!!!

Madeleine’s Blog

September 7, 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 "outside world" :)

Madeleine gets to fly home tomorrow - four days early! Her blood levels have come back to normal, she feels quite a bit better, and it is time to go home to complete her recovery.

Deanne and Madeleine went out to celebrate tonight at a restaurant in Bethesda, and even got to enjoy a beautiful sunset.

It definitely feels a little different to have the freedom to go outside once again after so many days in the same hospital room and environment. It is also very different (and enjoyable!) to have new choices of things to eat, and the desire to eat food as well.

We are all relieved that Madeleine made it through the treatment so well, thanks to answered prayers, encouragement from so many people, and the excellent care of the doctors and nurses at NIH.

In a month, Madeleine will be back for a few days of scans and also apheresis (where they run your blood through a device that gives the doctors an idea of how the TIL cells are doing). This means that she'll have to keep the "port" that they surgically put into her neck until after that visit.

So, the treatment part of the TIL therapy is completely over, and she has moved into the observation and assessment part of the trial. Thank you for your continued prayers for Madeleine - we are praying that those TIL cells will continue to mobilize and fight any remaining melanoma.

Stronger every day!

Madeleine’s Blog

September 5, 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

Receiving another encouraging gift

Madeleine had been feeling fairly poorly (fatigue and "bone aches" from the shots they give you that stimulate your bone marrow to start producing more white cells). But, last night and today there has been a huge improvement in her fatigue!   

She is no longer "neutropenic" (low white cell counts) so that makes a big difference in how she feels. She even went on a long walk last night and also today, where before that would have just been impossible a few days ago. This is a big step toward her getting ready to go home - she also needs to have stability in her other blood counts. They have been having to add platelets, so we are hoping those will also stabilize soon. If they do, then she may even be able to go home early.

We continue to be blessed by so many people's kindness... This time by a 14-year-old girl from Virginia who doesn't know Madeleine, but wanted to send a gift to encourage a young person battling cancer. She sent Madeleine a beautiful bag (pictured) filled with all different kinds of makeup and other fun items. Madeleine has already made good use of that. :)

Dart gun hits its mark!

Yesterday, Madeleine recovered enough that she was no longer needing to sleep as much of the day. As her Facebook post put it, "I'm awake enough to realize that I am bored out of my mind!"

Just at the right time, she received a boredom-busting gift from her cousins: a Justin Beiber poster and a couple of nerf dart guns to go with it . It didn't take them long to get the poster up - and the nerf guns loaded...!

If you look closely, you can see that one of the darts has found its mark. (Not sure if the marksmanship should be attributed to Madeleine, or to Deanne, but it looks like they had some fun with it.)

Thanks again, everyone, for your prayers, gifts, and encouragement!

Rest is a gift

Madeleine’s Blog

September 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

Doing what she does best right now - sleep!

A few days have passed since the IL-2 has finished, and Madeleine is slowly getting stronger. They have given her more red blood cells and platelets to help get her cell numbers up to a better level. She is still having lots of the expected fatigue (which goes along with having low blood counts from the chemotherapy). And she is continuing to experience some nausea, puffiness, and other symptoms from the IL-2. 

But the good news is that things are slowly getting better! You can tell that things are improving because she looks good enough that I can post a picture!! :) 

Madeleine's dad has now flown back home, and Deanne continues to stay by her side there at the hospital. It has been a long haul for all of them, but everyone has gotten a little better rest during the past day or so. A few hours of sleep makes a lot of difference! (Deanne adds that coffee is helping a lot too!)

The doctors have told them that Madeleine's TIL cells appear to be "reproducing" and looking good so far. This is good news - we want those cells to continue to be there to fight off any melanoma, now or in the future.

Thank you for the notes and cards of encouragement, and for all of your prayers on our behalf!

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.