Sophie’s First Day of Recovery

We wanted to share some additional updates on Sophie’s condition, as well as the story behind how we got to where we are today. We’ve learned more over the past week of our lives than any parents should ever have to learn. Our sentiment is similar to almost every similar website: We’ve gone from “That could never happen to us” to “This is our story”.

To summarize succinctly, a little over a month ago, Sophie came down with a mild fever and severe cough.  She was prescribed two rounds of antibiotics, but neither led to significant improvement. Original chest x-rays and exams also didn’t show anything too alarming; nothing more than a cold or mild infection. However, as time went on, we both became increasingly concerned, not because of concrete symptoms, but because we both knew that Sophie was not acting like our “happy, carefree sweet girl” that she had always been.

We went back to Sophie’s original pulmonologist, who referred us to a Dr. at Columbia NY-Presbyterian to perform a bronchoscopy.  Prior to the procedure, he requested a last minute chest CT scan to arm him with some different information to have a more successful bronchoscopy.  The night after the CT, we received the devastating news that no parents should ever have to hear; they had discovered a  large tumor in Sophie’s lung that would need to be biopsied immediately to determine malignancy.

There is no way to describe how we felt at that moment, or really any moment since then. The hours of meeting with different doctors, the consults, the exams, the tests, gathering information have all been grueling, devastating, and more trying than we ever thought we’d experience in our lives.  And the worst part?  How to decide which doctor and institution that would give our little girl the best fighting chance she would have for this scary disease.

This past Monday (11/14/16) was Sophie’s 3rd birthday. We decided to celebrate her birthday early and threw a last minute party for her in our home that weekend. On her actual birthday, we had an multi-hour open lung biopsy done at Columbia Presbyterian with the most phenomenal, kind surgeon in the world.

The pathology reports confirmed that Sophie has an extremely rare childhood cancer called pleuropulmonary blastoma (PPB). So rare in fact, there are only a few dozen diagnoses per year around the world. After what felt like years, and thanks to the amazing behind the scenes help of some extraordinary people, we found a team of doctors at Memorial Sloan Kettering Cancer Center (MSKCC) who have a tremendous amount of experience with rare cancers and have worked on several successful PPB cases. The overall plan is to treat with chemotherapy, followed by surgery to remove the tumor, followed by additional chemotherapy.

Sophie’s treatment began yesterday (11/17/16) at MSKCC pediatric ICU where her port for chemo was inserted, and her first chemotherapy treatment was administered. We are currently still in the ICU, but hope to be discharged next week.

While we know that yesterday was the first day of one of the most difficult journeys we will hopefully ever have to face, we also know that it was the first day of Sophie’s recovery.

To all our friends, family, organizations and even strangers who have stepped up to help with everything included but not limited to: organized prayers,  anonymous donations, meal arrangements, much needed hot coffee sitting at our front door before leaving for the hospital, couriers bringing items back and forth from our home, working connections to get us in with the best doctors, someone I’ve never met creating this website, phone calls, voicemails, texts, emails, and so many other countless and unbelievable acts of kindness, we truly cannot thank you enough.

We will continue to provide updates as we know more about Sophie’s treatment plan and recovery.  To stay updated, please feel free to sign up for automatic updates through the webpage that has been created to help her fight this terrible disease.

48 Comment

  1. Jenny and David, I want to thank you for allowing us to be right at your side and fight this together with you. We love you and your precious children and will continue to support you physically, emotionally and spiritually. You are never alone in this. Our thoughts and prayers are constantly with you. With love and blessings for complete healing,
    Elazar & Rivkah

  2. Dave you are in Scott and I’s thoughts and prayers. Your Google network is on call for whatever you need. Hug that sweet little girl for us.

  3. Sending my thoughts and prayers your way!

  4. David and Jenny and Sophie and JJ: we love you so so so so much. We are with you all of the time even when we can’t physically be with you.

    May you only have positive notes to post as Sophie recovers from PPB.

    Love you always.

  5. Vincent Wienczorkowski says: Reply

    You are all in my thoughts and prayers. Whatever you need just ask.

  6. Sophie is in my thoughts and prayers. Thinking of you all and wishing her a speedy recovery!

  7. David and Jenny, we are sending our love and prayers from Charlotte to you and especially to Sophie. Know that you are not alone in this but have a spiritual and physical army rooting for you all.
    Sandra, Yaron and kids

  8. David and Jenny ,,Our Prayers are with your sweet daughter and your family,,God Bless,
    my facebook family knows a little girl named Sophie is in need of Prayers ,, many people around the world are praying for Her,,,,anything you need call me ,,,Tom at Dad’s office

  9. Chris McLachlan says: Reply

    Sophie and David and Jenny. You are the bravest people I know. David, though it’s been many years and many miles between us, your precious family is in my heart and I am asking for only the very best outcomes for you all. Many many hugs.

  10. I never met you or Sophie but when a sweet little angel needs our prayer she is like our own.I keep Sophie in my prayers everyday and can’t wait to celebrate a full recovery very very soon.
    Keep strong.

  11. Michelle Jaffe says: Reply

    Benzi and I are thinking of you guys and davening for Sophie.

  12. Shaani splaver says: Reply

    Hi! If you want please get in touch with me. I’m a 46 year old cancer survivor. I was first diagnosed at 9 years old of a tumor in my neck. It was removed and I needed radiation and chemotherapy. I was ok for a while until
    It grew back and I had it removed again at 18 years old. I went to stern college and NYU graduate school. I became an occupational therapist got married and have 4 children. Thank g-d I’m doing well now. If you ever want to get in touch with me my phone #954-962-2158.

  13. Craig Dinatali says: Reply

    Sending thoughts and prayers your way.

  14. We are thinking about and davening for Sweet Sophie everyday . She is such an amazing and strong little girl and is so blessed to have such wonderful and loving parents.

    1. We are here to support you in any way that you need .

  15. I am making sure that her name is included in misheberaibachs at darchei noam. Refuah shelaimah

  16. David and Jenny, We are thinking of you and your beautiful family through this most difficult time. We will be sure to daven for Sophie. Sending hugs. Love, Sarah and Josh Goldstein

  17. Our thoughts and prayers are with you. Be strong and have faith.

  18. Keeping you in my heart and prayers.

  19. David, Esti and I are thinking of you guys. We met Sophie walking home from shul one day and she and Esti held hands while being pushed in their individual strollers. We knew that she was and is a very special and sweet little girl. Stay strong..we are davening for you.

  20. You are both very strong people and Sophie is lucky to have you both as parents! Keeping you in our hearts and prayers!love u both!

  21. Thank you for sharing your journey with us. She is such a sweetheart! I am praying for Sophie’s Full recovery.

  22. Talia Furleiter (aka Ezra's mom) says: Reply

    Although we didn’t know what was going on, I was struck by Sophie’s sweet smile and obvious joy at her birthday party last week. Ezra misses her and we’ve all been davening for her refuah shleimah.

  23. David, Jenny and Sophie –
    We love the title of this post – Sophie will recover and we are sending our prayers that it should be as quick and painless for her as possible! If there is anything at all we can do on our end from Israel (besides the obvious – davening, tzedakah, etc.), please don’t hesitate to let us know.

    ~Rachel (Glaser) & Idan Braslavi

  24. David and Jen – sending my prayers to Sophie and your family for a speedy recovery. Be strong.

  25. Connie and Ed Divel and family says: Reply

    Dear family of four you now witness you are a family of many all working as a team to help in recovery and support for Sophie, and all of you with strength and love. May the miracle of many prayers lifted be answered with such a positive force as you have written, this is the first day of her recovery.

  26. Jennifer Seligman says: Reply

    May Sophie have a speedy recovery. We are there for you and want to help with meals or anything else you may need. Just knock on the door or call– really, I mean this most sincerely. We are praying for Sophie and your family daily.

  27. Memorial Sloan Kettering is the best. They cured my brother of leukemia more than 30 years ago. I am keeping Sophie in my prayers.

  28. Simi and Yaakov Maline says: Reply

    Yaakov and I are keeping Sophie and your family in our prayers. We hope Sophie likes the presents the class bought her and look forward to greeting her back at school after what we hope will be speedy Refuah sheleima!

  29. Sophie, we are all sending our love, especially Hannah. We look forward to hearing good news very soon! May you have a speedy and full recovery. Jenny and David please feel free to let us know what we can do to help.

  30. Gisela Zerykier says: Reply

    Dear sweet Sophie, Jen, David & the whole community of families & friends, you are an extraordinary bunch! Keeping you in my prayers & sending good healing energies, and much love

  31. I am saddened to read this but amazed at how courageous your little girl is! She and you are both fighters and the disease doesn’t stand a chance. I’ll keep Sophie and your family in my prayers.

  32. Jenny and David, we can’t imagine what you, your sweet little girl and your family must be going through at this time. Please known that Sophie and your family are in our thoughts and prayers. With much love, Tracy, David, Leora and Ezra

  33. Jenny and David and Sophie, Prayers and strength are being sent to you. Jennie, you are a determined, strong woman. That strength will radiate to Sophie. May Hashem give you the strength, the stamina for you and David and Sophie to fight this. Love, Debbie Gelb Glassman

  34. Jennifer,
    I received your email this evening and I immediately wanted to send my thoughts and prayers to Sophie, you and your family. You are in the best care at Sloan Kettering, and the treatments Sophie is receiving will cure this terrible disease. Stay strong, stay positive and my daughter wanted to say may God heal Sophie.

  35. Jen – Sending my thoughts and prayers to your precious Sophie and your family. She is a fighter and will overcome this. May you and your family continue to find strength. Wishing Sophie a speedy recovery.

  36. Dear Jenny and David,. Many thoughts and prayers to your family during this recovery period. Science acknowledges the strong power of positive thinking. Sophie is lucky to have you set such a positive pace. Abby Prince (Ariella’s mom).

  37. Dave,

    Sophie, you and your family are in our thoughts and prayers. Let me know if we can help in any way.

  38. I have a colleague at school that is on the other side of this. His healthy 2.5 year old had neuroblastoma a day away from her 1st birthday. He is available for chatting, voice hand holding and recommends the following organizations for support/money (sayd Mia Lyn sent them $500 right of the bat for tolls, parking etc.) Mia Lyn Foundation, Terry Lyn Foundation, Children’s Cancer Foundation, Ronald McDonald House, Child LIfe (for siblings). Also says to lean on your case manage. He says that your doctors are probably doing what his did- consulted a regional team that could include Philadelphia, Boston etc. He is reachable as follows: Drew Calvo chief_628@hotmail.com 732-803-8425. Abby Prince (Ariella’s mom)

  39. David,

    I just wanted you to know that we are thinking about you. You are in our prayers.

    Italo, Amy and Isabella

  40. Meredith Winokur says: Reply

    Sending prayers to you and your family. You’re in the best hands!

  41. Sophie You can do it!!! With parents as strong as David and Jenny, I know you will put everything you have into this. You have so many people praying for you and holding you in light
    I love you all and am praying for you every minute
    Chaya Bracha

  42. Nehama (Verter) Moskowitz says: Reply

    My thoughts and prayers are with you. Wishing a speedy recovery to Sophie!

  43. We are thinking of you all and praying for Sophie every day.
    Sharon and David

  44. We have Sophie in our prayers for a Refu’a Shlema.
    Sara & David Robin

  45. Jenny and David, Please know that I am thinking of you and your family and have Sophie in my tefilos for a speedy and complete recovery. Joan Sprung

  46. So sorry to hear about this. Keeping Sophie and your family in my prayers for a fast and full recovery.

  47. Jen, I am so sorry to have heard about this. Sophie is such a beautiful sweet girl, my thoughts and prayers go out to you and your family.

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