Jenna - NED for eternity

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11/9/2010 11:42am
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Replies: 42

I am very sad to tell you that Jenna passed away over the weekend at the age of 20. 

She responded beautifully to the BRAF/MEK combo.  We could watch the sub-qs shrink and disappear.  The internal mets were reduced to about half the size by her first CT scan.  She was feeling so much better, but starting to get some headaches.  An MRI was suspicious for leptomeningeal mets, but not conclusive, and an LP came back without any melanoma cells, so we were able to continue on with the trial and double her dose in hopes that we could get enough of the drug into her CNS to control whatever was going on.  With the addition of some new meds to help decrease the intra cranial pressure, it was under control for the most part until last Tues. A new MRI showed both lepto mets and multiple small brain mets.  A multiple location, simultaneous hemorrhage of these small mets took her out of the cancer.  Our neurosurgeon said he had never seen an event like that before.  We can only attribute it to the mercy of God as He continued to have his hand on Jenna through this entire 6 1/2 year process. We experienced a lot of joy, and made the most out of every experience.  I am incredibly blessed to have been able to see her through, and learn from her amazing attitude.  She would joke that she felt like the knight in Monte Python's Holy Grail movie that keeps getting appendages chopped off yet continues to yell at his opponent "come back and fight, this is just a mere flesh wound".  Well, melanoma may have continued to reduce her life, bit by bit, but she did not let it take her spirit, and she lived her life with grace and enthusiasm until the very end.

I know that there has been a lot of discussion on the board about the BRAF and inhibitor drugs and whether or these drugs cause the disease to go to your brain, creating some fear in doing these trials.  It is my understanding that if you get the opportunity to fight melanoma long enough it will probably find it's way to your brain.  In Jenna's case, she had such extensive disease before we could get her an opening in the trial, that it had too much of an opportunity to get there.  These drugs are amazing, they can give you your life back quickly.   Without question, the best available treatment, and we should collectively be fighting to get more trials open and cut through the red tape.  It is hard enough fighting cancer, but fighting "the system" to get a drug that you know can extend your life (living) is just too cruel.

 Thanks to all who post links to research and share their stories and support here.  Your dedication to the board and one another carried us farther down the path than we thought we could ever go.

Fight On!!

 

Lauren mom to Jenna

lhaley - (11/9/2010 - 11:48am)

Lauren,

My heart is breaking for your family and tears are flowing, there are no words to let you know how I feel.  Jenna was such a trouper fighting every inch of the way. She is now at peace.

Thinking back on your posts in the past of her journey I know that Jenna did live every minute to the fullest. We should all use her as an example of how to live our lives with cancer.  20 is just too young to be taken.

Sending prayers to your family,

Linda

Sherron - (11/9/2010 - 12:13pm)

I am shocked and so sad to read this.  It breaks my heart for all us fighting this disease.  But, it makes me angry for it to take someone so young.  I know Jenna was an amazing young woman and she will forever live in your heart.  Prayers to you and your family and may God give you comfort and peace.

Take Care,

Sherron, wife to Jim

Lauren,

I am so happy that I got to meet Jenna. Her legacy will live on. I do believe that inch by inch we are getting closer to effective therapies and hopefully a cure. Jenna is in heaven championing for this I believe. You are a phenomenal mom and did everything you could, you are an inspiration to me! My heart goes out to you and your entire family, may all those beautiful times you had together sustain you through this tough time and always.

With sympathy and love,

Sue

Every day I wake up is a gift!

Lori C - (11/9/2010 - 12:34pm)

I am very sad and sorry to read this.  It was far too early to lose her.  My thoughts & prayers are with you and I will include Jenna in my candle lighting. 

KellieSue - (11/9/2010 - 12:47pm)

I'm so saddened to hear of Jenna's passing. My  heart hurts for you family.

 

Kellie, Stage IV

Cancer Sucks. I'm so not done kicking cancers ass!
I have a lot of life left to live

JoanR - (11/9/2010 - 12:54pm)

Lauren, my heart goes out to you. To have your child fight this insidious desease for most of her life is unfair.  I agree about having to fight the system along with the disease is unacceptable, and makes the fight so much worse. Please know you and Jenna have been in everyone thoughts and prayers for so long, and now knowing Jenna is at peace, our toughts turn to you as you come to terms with your loss. Make sure you look after yourslf and find peace in knowing all you did for Jenna made a huge difference to her.  Kind thoughts, Joan

LizzM - (11/9/2010 - 1:07pm)

Lauren, I am so sorry about the loss of your beautiful daughter, Jenna. She was such a fighter and was blessed to have you by her side every step of the way. I pray for your comfort and peace as I know this is a difficult journey to be on.  If you ever need to talk to someone who has been where you are please don't hesitate to email anytime.

Take care ~ Liz

ValinMtl - (11/9/2010 - 1:09pm)

Lauren, I'm so very sorry for your family, it was terrible to read this news.  To lose a child so young is a nightmare but I am sure you have comfort knowing that Jenna is safe from the monster and in the arms of Jesus.  My thoughts are with you and yours, til you meet again, Val xx

Live Laugh Love
Nothing is worth more than this day!

Lauren,

You and Lauren will remain in my prayers. She was a true hero with a great attitude.

Jerry

It's about kickin' Melanoma's butt!

"Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

debbieVA - (11/9/2010 - 1:21pm)

lauren....

My heart breaks for your loss.....

 

May a choir of angles, come to greet her

May they speed her to paradise

May the Lord enfold her, in His mercies

May she find Everlasting Life....

 

Peace be with you....

 

Debbie Stage 4 NED

Wendi Lynn - (11/9/2010 - 1:27pm)

Lauren & family,

I can't begin to understand the void you must be feeling, but I hope that knowing Jenna is now pain free your grief will be eased just a little bit.  Thoughts and prayers to you all!

Wendi

Becky - (11/9/2010 - 1:29pm)

Oh Lauren I found out from Jen and my heart just broke. Jenna was an amazing girl with an amazing family. I am glad she is out of pain but so angry she had to be in pain in the first place. I hate hate hate this disease.

Thinking of you

Becky

King - (11/9/2010 - 1:39pm)

Lauren,

 

I offer my sincere sympathy to you, your family and friends.  Words can't even come close to expressing the sadness I am feeling.  I have such admiration for you and Jenna in your battle with this wicked disease.  We know Jenna is in a better place but it makes no sense as to why she had to leave at such a young age.

 

I pray you are surrounded by support and love in the days ahead.  And Jenna's participation in these trials is sure to help others in their battle with the beast.

 

So Sorry,

 

Kathie 

Stage IV 7/05 Liver mets

BarbieGirl - (11/9/2010 - 1:40pm)

Lauren,

My heart is so heavy.  I cannot imagine what you and your family are going through right now.  I"m so, so sorry.  I'm praying for you, and for all of Jenna's family and friends (and those of us who loved her and felt like we "knew" her from this community board).

Love and *Hugz* from the heart, and prayers for peace during this very difficult time,

~Lisa~

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

Dear Lauren

i am so sorry for your loss. Even though i have never met Jenna i feel like i knew her from your posts. What an incredible young lady. Yes she is free from the monster and not in pain and as a parent there is nothing worse than seeing your child suffer so she is now at peace.  

Our thoughts are with all your family at this difficult time. Please let me know if you need to talk to someone.

James

Fen - (11/9/2010 - 2:57pm)

there just aren't words, Lauren.  My deepest sympathy.

Cate - (11/9/2010 - 3:37pm)

I am so sad to hear this news.  I am speechless and hope that she is finally at peace.  Take care of yourself and I hope that one day we can fight this horrible disease and WIN.

PSD - (11/9/2010 - 4:28pm)

Lauren,

I am so sorry for your loss. Jenna has been so strong and determined with you at her side during this fight. My thoughts and prayers are with you during this difficult time. You have been truely amazing and supportive of so many while enduring this cruel disease with Jenna. Thank you.

Pam

Dear Lauren,

   I am SO SORRY to hear about Jenna......so tragic, so young...melanoma SUCKS!!!

Hugs,

Vermont_Donna, stage 3a

Nancy - (11/9/2010 - 6:36pm)

I'm sad that melanoma has taken yet another ....  May God's grace comfort you through the days ahead, and may fond memories of Jenna remain...forever..

MaryD - (11/9/2010 - 7:29pm)

Lauren,

I too am happy and privledged to have met Jenna and all of you!   Nothing can mitigate the incredible sadness this brings to your family but Jenna is a wonderful gift and blessing to your lives. Her strength, and joy of life inspired all of us!

Such an amazing family, and you Lauren, were such a tenacious and courageous champion for Jenna and would move mountains to get her where she needed to be.

My heart so aches for you but I just know Jenna is whole, happy, at peace, and smiling down on all of you.  May her love and spirit guide you always.

Lots of love,

Mary

Lauren,

I am shocked and sadden to hear of Jenna's passing.  You and your family have my deepest sympathy during this most difficult time.  You were the best Mom and caregiver and Jenna was blessed to have you by her side.   I hope that you can find some comfort knowing that she is no longer in pain or suffering.   You and your family will be in my thoughts and prayers.

Pat

Jenjen - (11/9/2010 - 10:00pm)

Lauren,

When i received your email i was heartbroken, scared, devastated , etc. I was taken by surprise as I had seen the Halloween pics the week before and was happy to see it looked like Jenna and all of you were doing ok. I am so sad as Jenna was an amazing girl. I am so so so thankful to you and to her for helping me get through my diagnosis. I am lucky to have been able to meet you both and have you in my life. I honestly was amazed with how Jenna handled herself through her entire journey and i could only hope to show the same hope, courage, determination and class that Jenna did as she battled this horrid disease. Being young too (well not as young as Jenna but close) i felt a very special bond with Jenna. Not many young people get to experience what a cancer diagnosis can do to you and your family and how it changes you forever.

I know you fought for Jenna, her treatments and in the fight against melanoma with the help of the MRF. I pray that more people put that kind of effort into the fights, so we can finally find a cure to end all this suffering. Praying for you and your family and that Jenna no longer has to deal with this and can live her life without pain, without suffering and without Melanoma.

Please keep in touch.

 

Jenjen 3a , 27. Last week of ld interferon. NED 14 months and praying it holds

Roxanne - (11/9/2010 - 10:22pm)

I am so very sorry. My most sincere condolences on the loss of your dear daughter. Roxanne

JuleFL - (11/9/2010 - 10:28pm)

I am so very sad to hear this news and will be praying for you and your family.  Jenna is free from the hell of this disease.

Jule

Oh, I have slipped the surly bonds of earth and danced the skies on laughter-silvered wings.........put out my hand and touched the face of God.
John Gillespie Magee, Jr

triciad - (11/10/2010 - 6:51pm)

Lauren,

I am so sorry to hear about Jenna.  Please know that my thoughts and prayers are with you.  She was too young to die from this dreadful disease.  You have been through so much, and I pray that all the memories of her will comfort you as time goes by.  To say that I am heartbroken would be an understatement.  God bless you and your family.

Tricia

Dear Lauren,

I am so saddened to hear this news.  I wish I introduced myself when I saw both of you at the MRF Gala in May at the Presidio.  There are no words except that I am so sorry.

Krista

IrishBama - (11/10/2010 - 8:05pm)

I'm so very sorry.  I know that Jenna had an exceptionally strong spirit and she fought a hard fight.  I hate this disease.  I hope that one day your memories of Jenna will bring a smile to your face instead of sadness.  My prayers are going out to all of Jenna's loved ones and friends.  She will always be remembered by the people here on MRF.

Bonnie Lea - (11/10/2010 - 8:07pm)

Dear Lauren

I am so very sorry to hear about Jenna.  She was a great fighter as you were being by her side.  It is a blessing that she is out of this pain from this horrid melanoma.

Peace be with you and your whole family and network of friends who are hurting. 

Bonnie Lea

Just Keep on Hanging In

Jim M. - (11/10/2010 - 8:23pm)

Lauren,

 I'm so sad to read of Jenna's passing. I pray that you experience the same peace that Jenna must be experiencing now. I pray you continue to see God's hand guiding you and strengthening you day by day.

 God bless you always,

Jim M.

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