tumor donation

**It was suggested to me that I write about my experience with tumor donation … to hopefully help other parents of children with terminal brain cancer. So please feel free to share**

 

Gilroy Family Photographer | JLK Glitter Shoot-43Tumor donation.

Not something I ever imagined we would have to discuss in regards to one of our children.

Our daughter Jennifer was diagnosed with DIPG on her 6th birthday, Oct. 28th 2013.  DIPG is a brain tumor that is terminal upon diagnosis. I couldn’t believe that any of it was real. I was still in that fog 3 months later when we found out that the tumor had progressed… rapidly and it was time to go on hospice.

The tumor on her brain stem had progressed to different parts of her brain and her spine. We asked if all the tumors would be helpful. The way her beloved and loving oncologist responded to that question was my first real glimpse into how important the donation of tumors is in the world of pediatric neuro-oncology is. She was .. well for lack of a better word…”excited” about telling her colleague; Dr. Michelle Monje, the head researcher at Stanford University School of Medicine, about our decision.

I thought it would be easy emotionally to donate. I thought I was prepared for so much in her final days.. I wasn’t. I had never used the words “her tumor” .. it wasn’t supposed to be in there so I never wanted to connect it with her. In those last weeks, as she suffered more as a result of those tumors, I began to hate them in earnest.

At that time I was so sure we would donate, I couldn’t imagine not doing it. I thought the logistics would be the hard part, but that was easy from the beginning.

She took her last breath at our home, in my arms, 2 weeks later, February 12th 2014. …then I got it. I understood how hard this choice really was.

Her little body had been through so much. ..it was finally as peace. Did I really want to put it through more? I was worried about the scars..what if I wanted to see her again?

I didn’t want to have to let her go… physically.  I wanted to lie there with her forever.

My husband reminded me gently that this was what we wanted to do… to help her make a difference. Eventually he had to help me out of her room.

It was not easy for me.. not in that moment. I think if this hadn’t been our plan that time that I had to say goodbye to her body would have been even more traumatic. If I didn’t have a reason to let her go I don’t think I ever would have. The funeral parlor staff quietly came and got her.

I kissed her head and told her “she had work to do.” Work a 6 yr old should never have to do.

It’s only been 2 months since she died.  Initially hearing the surgery was done I felt a sense of relief, finally those horrible tumors were out of her. I knew we would be burying her the way she was supposed to be… tumor free. I saw her afterwards and I couldn’t tell that she had donated, the markings were not visible.

We have received multiple updates (we asked for them, we could have chosen not to get them) about her tumor cells.   Notice now I say her tumor cells now, about 2 weeks after she was gone I started to feel connected to those cells … something that was once a part of her… a piece of her. The final physical piece. 

We have agreed to have her cell line shared with other researchers. It’s not how I wanted her to see the world … but now she will. That gives me some twisted sort of relief. To know a part of her is still fighting,  still waging a war against pediatric cancer.  She would like that.  I do too. 

Jennifer is survived by 3 younger siblings. When they are older I will share with them the articles that credit her cells and the fund we started in her name with helping researchers…just 2 months later and I already have one saved for them.

We will also eventually give them the option of seeing the research in action at Dr. Monjes lab. They will be proud of their big sister for making a difference.

I hope they will be proud of their parents too. For making a gut wrenching choice, for making a difference by giving a gift that only we.. parents of children with terminal brain tumors can make. ..

Tumor donation.

***For me it was a surprisingly difficult thing to do in the moment.. but I am so very thankful that we did it.  If you have any questions or concerns that I might be able to help with please feel free to ask. Here is a news segment on our donation***

Gilroy Family Photographer | JLK Glitter Shoot-64

 

 

52 Responses to “tumor donation”

  1. Thank you Libby for all that you have done and for all that you will do in the future for pediatric cancer. You are AMAZiNG! Jennifer is AMAZING!
    Hugs, love and prayers.

  2. Way to go Jennifer! Way to go Libby! I can’t even imagine how hard all this has been but what an amazing thing you guys have done and are doing to fight against pediatric cancer. You have a huge cheer team behind you 🙂

  3. Beautiful. So horribly beautiful. Your courage and Jennifer’s fight never cease to amaze me. You both are why I am fighting.

  4. This is just really great. I know it will impact someone who is faced with this option. It is such a noble and selfless choice. Your family amazes me!

  5. Your speaking on the difficulty of tumor donation while suffering the loss of your child Libby is so honest and heart-wrenching, yet I hope that your words will help someone else that is facing this decision make the choice that just may find a cure…and i believe it will. THANK YOU for letting Jennifer continue to be a hero and lead the way to a cure for this horrific disease!

  6. You are such a strong and amazing woman and Mother. I think of you every day and pray that you have the strength to put one foot in front of the other each morning. Continue to write. Your words are so powerful. My thought are with you and your beautiful family.

  7. You are an awesome and selfless family! Thank you for writing about this and sharing your story. Your strength and courage amaze me. Jennifer will never be forgotten!

  8. Thank you! As a researcher-turned-SAHM for awhile, I’ve worked with multiple cell lines in research labs. Thank you for your bravery and courage in donating Jennifer’s tumors! I hope they help researchers find new ways of treating and hopefully curing DIPG and saving lives in the future. What a great job she (and you!) will have done when that day comes!

  9. I know you don’t agree or see this, but you have more strength than I ever imagined possible for a mother. I am amazed and in awe at your love for your child. As weird as this sounds, as we have never met nor spoken, but from one daughter’s mother to another, you and Jennifer hold such a special place in my heart .. and it expands with every post. *Forever Team Glitter Squad* <3

  10. Wow what an amazing couple you both are. I have no clue that I would of been able to do that. The heartache I was going through being generous would not of been a easy thing. But you both thought of others and not just yourselves and your pain. Someday Jennifers contribution is going to be saving lives and there will be so many people thankful for that. God Bless you Libby and Tony for your big heart and your generosity. Your strength and courage is such an encouragement to me. Be cause of your decision Jennifer forever will live on…

  11. You and JLK inspire me. I look forward to your blog and I cry each time I read your posts…sad and happy tears. Thank you for sharing your Jennifer with all of us. I’m a stranger that checks in daily….looking for inspiration, being reminded of the amazing gift I have of being a mother to my 3 and constantly in awe of you and your family’s strength and grace.

  12. You have always been a strong mom and woman; a fighter. Jennifer learned how to fight from you and she continues to fight just like her mama taught her. She will live on forever in the research from your generosity to other families. This is one portion of her legacy and it’s an amazing legacy to have. Tons of love to you!

  13. beautifully written… and a beautiful choice you made.
    i am so glad Jennifer will get to see the world and continue the fight you have made us all aware of. peace be with you and your family.

  14. I have been reading your blog for a couple months now. I couldn’t sleep last night at around 2:30, and your family came to my mind! I began praying for you! There are no words to even say on a comforting thing to say. I do pray God gives you an unimaginable and indescribable peace though. That sweet girl lives on and her brothers and sister will be so proud of her and you guys as parents. You are helping in the fight to save others lives. Sweet Jennifer will not be forgotten. Thank you for posting all of your wonderful photos. I will continue to pray for you guys!!! With much love from Colorado!!

  15. I’ve finally gathered the courage leave a comment. My cousin posted a link to your blog on fb back in December and I’ve been fo, not knowing what lay in store for my family. A week to the day after JLK passed away our 2 1/2

  16. Sorry for the previous comment accidentally hit submit. I have been following your blog since December not knowing that I would shortly be walking in your footsteps. Our 2 1/2 year old son was diagnosed with DIPG. I’ve been scared living a nightmare but have found some solace through your story. He just finished his radiation therapy in Santa Clara last Tuesday and his symptoms have subsided, he seems like a normal 2 year old again. We are praying everyday to have as long as possible with him. I just want say thank you for having the courage to share you story and raising awareness. I’m in shock of the lack of funding for pediatric cancer. Sincerely praying for a cure but if or when the time comes my husband and I plan on donating his tumor as well.

    I prayed for Jennifer and I pray for you everyday , in hope that you find relief from your loss. You are so very strong. I want to share that you helped me more than you’ll ever know.

    1. Yes it is. Even from a distance. KidsVcancer can help with any logistics. Also Stanford shares with other researchers so her cells will be all over!!

  17. Your story continues with me daily and I think of you and JLK. What you have done is amazing and WILL help another kid. XX

  18. No words can express how much your post moved me…I’m sure it will help others in a similar situation to be as selfless! Also sending prayers to Leanna, her son and family…

  19. The gift you and Jennifer have given to other kids and families is priceless. You are so amazing and wonderful and caring Libby. <3

  20. You, my friend and your family all 6 are courageous! I am always behind you and fighting the fight aside you! Lots of hugs!

  21. Libby, you and your whole family are inspirations. What a difference you have made and continue to make. Thinking of you always …

  22. Breathtaking. Beautifully, tragically, brutally breathtaking. It’s easy to see why Jennifer was amazing beyond comprehension. Her mummy and daddy are too

  23. Libby, I wanted to share a story with you. My son is a koala and he struggled with school at the beginning. He cried every day and I would leave in such turmoil. If I stayed to volunteer it made it worse, and I didn’t know what to do. I cried about it and worried since he didn’t seem to be getting any better. On the contrary it seemed to be harder and harder for him. I overhead some of the other koalas tell each other, there he goes again crying all the time. And that hurt. I thought, these are 5 year olds! I really thought I would have to pull him out and home school him. He worried all weekend about having to go back to school on Monday and it was taking a toll. One day when I was walking him to class, Jennifer was coming towards us and she gave Jonah the biggest and brightest smile and called out his name and gave him a big warm hello. It stopped both of us in our tracks and my son lit up and waved furiously without saying anything but he was so happy that another child had said hello to him. Jennifer gave my son this gift. The next day I was on the playground during recess and my son was alone off to the side just watching everyone else and Jennifer came up to Jim again giggling and asking him if he wanted to play with her. Libby your daughter is amazing. I volunteered in computer lab and helped her with some computer issues and she gave me that same beautiful smile and thanked me. I wanted to hug her and thank her for sprinkling some of her glitter on my son. I wish I would have. Thank you Libby for sharing Jennifer with all of us.

  24. So proud of you and Jennifer! I know her tumor will help save lives one day! Jennifer is sprinkling her glitter down on all of us! xoxoxoxoox

  25. Thank you, for making a very difficult choice. A selfless choice to help other families faced with this kind of cancer.

    Thank you for your devotion and sharing your love for Jennifer it is far reaching, and very touching.

    Your family’s love for Jennifer will save another child’s live…

    Stay strong. 🙂

  26. So incredibly selfless. Jennifer is “at work,” and I know she will help others, because of yours and Tony’s amazing gift.

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