A Day of Love, and an Announcement.

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Michael and I couldn’t sleep last night. We both reverted to hourly wake-ups. The first pot of coffee was brewed this morning at 5am. We’ll get used to this, and it will eventually morph into some kind of healthy pattern, I’m sure. We vacillate between intense pain and a strange kind of numbness. Even though the numbness doesn’t hurt, I prefer the pain. During the pain, Benjamin is present, even in his absence.

We have much to do to prepare for our final goodbyes to our son. But today, we decided to put all of the minutia on hold, and honor him in the best way we could–with a day on the water. A day of love. Kathy and Gana fed us and saw us off, and Michael, Banyan and I took the boat out into the Gulf to head north and try and find some fish.

A week before Benjamin relapsed, he and Michael picked me up on the boat at a downtown marina. It was very choppy that day, and Benjamin and I were laughing hysterically as we bounced with the waves. Today, on the Gulf, I remembered that moment and his laughter so specifically. I felt him so close. It was such a gift. My tears flew from my face, adding their salt to the sea.

Things are falling into place to honor Benjamin in private, public, and lasting ways. A community memorial service is being planned for early March, with details to come. For now, we would like to make a very special announcement.

The best way that we can honor Benjamin’s unparalleled bravery is to invest money into research to try and ensure that another family in a similar situation finds hope where our hope ended. We also want to say thank you in a huge way to the literally hundreds of friends, family and community members who have lifted us up during this chapter of our lives. We hope that what we have created will accomplish both goals.

We are proud, humbled, and so honored to introduce The Benjamin Gilkey Fund for Innovative Pediatric Cancer Research, a brand new branch of the Johns Hopkins All Children’s Hospital Foundation family.

Through Benjamin’s fund, we will be able to support the research of Dr. Oshrine and his colleagues. We can create parameters that honor Benjamin’s specific obstacles. And we know that the money we have invested will be housed in the new Research and Education Building, the structure we watched being built outside our window during Benjamin’s final months.

If you would like to support our efforts, please click here. Be sure to put Benjamin Gilkey in the “In Honor of” or “In Memory of” category, so that the funds are directed appropriately. Alternatively you can mail a check to The Benjamin Gilkey Fund for Innovative Pediatric Cancer Research, Johns Hopkins All Children’s Foundation, PO Box 3142, St. Petersburg, FL 33731-9954.

Benjamin was on treatment for Acute Lymphoblastic Leukemia for 772 days. During that time, he withstood the following:

  • 1 surgery to place his port
  • 1 surgery to place his apheresis catheter
  • 1 nasoduodenal feeding tube placed and removed
  • 1 cryoprecipitate transfusion
  • 3 doses of experimental antibody therapy
  • 3 peripheral intravenous lines placed and removed
  • 6 bone marrow aspirates
  • 10 days of immunotherapy
  • 17 liters of blood apheresis
  • 20 scans (MRI’s, ultrasounds, x-rays, CT scans, EKG’s)
  • 24 lumbar punctures
  • 24 doses of intrathecal chemotherapy (into spinal fluid)
  • 25 packed red blood cell transfusions
  • 72 doses of intramuscular chemotherapy (via shots)
  • 75 platelet transfusions
  • 100 doses of intravenous chemotherapy (via his port)
  • 108 (northbound) trips over the Sunshine Skyway
  • 178 nights in the hospital
  • 247 doses of steroids
  • 463 doses of antibiotics
  • 470 doses of oral chemotherapy

We will never be able to think about what Benjamin endured without pain. But if we can ensure that his life will help advance care for future families, that is a blessing beyond explanation.

37 thoughts on “A Day of Love, and an Announcement.

  1. Sending all of you so much love and support. I have never met you or your family but every night I look to read your updates. Your love, compassion, and inner peace is remarkable. May your sons journey be surrounded by gods love and the comfort of angels wings. May you heart grow knowing that soon he will blossom inside your heart. May every gentle breeze caress you as his breathe and every ray of light you feel be his endless love embracing you. God bless you all .
    Love, the Hynds-Taillon Family

  2. what an incredibly beautiful way to honor Benji. the families of the future will walk a lightened path because of Benjamin’s bravery and all the work you have done. you never cease to inspire us all. warm hugs to you.

  3. What a wonderful way to honor Benji. He was Such a wonderfully brave little man with a wonderful family. So proud of you all. Love and prayers

  4. The bundle of brightness and love that is Benji, already has and will continue to disperse and change the world.
    Wishing you peace, love, rainbows, and bursts of Benji.

  5. I think what you are doing is a beautiful way to honor your son Benji. I pray that one day there will be a cure for cancer and that no one has to go through what your family has. You are a remarkable family. Praying for strength for all of you. Thank you for sharing your journey of Benjamin, it was written so beautifully. God Bless.

  6. What an amazing honor this will be to be part of and watch the results, because with the name Benjamin Gilkey attached to it this is going to shoot for the stars and not stop until a cure is found.
    Much love ❤️

  7. What a beautiful way to remember benji, for generations to come❤ We will be honored to support the foundation. We have never met, but through friends, I learned about your blog. I have followed these last few months, I’ve never held my babies closer. You and your family are an inspiration to our Sarasota community, and we will help the foundation as much and often as we can. Just last night, I was wondering if I should go back to cancer research… your family’s strength, hope, and benjis unwavering bravery have made a lasting impression on this momma of a 4 yo and 5 yo. Much love to your family ❤

  8. His love of life and brightness will shine through this
    foundation. The legacy he leaves will be the hope of
    so many families to come and it is so apparent that his bravery
    was simply learned from his family. I am looking forward to
    honoring Benjamin in this way and feel so blessed to have the
    opportunity to do so.

  9. I love this. And I love you all. You’re riding the waves with bravery and grace, dear friend. Sending continuous support and much love.

  10. Dear Laura,
    I am amazed by you every day.
    I wanted to share this with you as I read that you made 108 trips over the skyway. My husband has always had a fascination with the number, and here is part of why…
    <>

  11. The number 108 is considered sacred in many Eastern religions and traditions, such as Hinduism[3], Buddhism, Jainism[4], Sikhism and connected yoga and dharma based practices. Even the pre-historic monument Stonehenge is 108 feet in diameter. 108 is a number known to be referring to spiritual completion, and it is no surprise that the early Vedic sages were renowned mathematicians and in fact invented our number system. 108 is a Harshad Number, an integer divisible by the sum of its digits. Harshad in Sanskrit means “joy-giver.” 108 was the number of choice for this simple reason: 108 represent the whole of existence. There are said to be 108 types of meditation. Some say there are 108 paths to God. Indian traditions have 108 dance forms.

  12. Laura and family, we would be honored to support this foundation in memory of your son. We have never met, but through friends on fb, I learned of your blog. I have prayed and cried for your family since I read your first post. I admire how you beautifully wrote Benji’s journey and allowed others to be a part of your lives. I am hopeful that I will be able to have the strength to do the same one day for my son. While, I do not know much about ALL, I do know way too much about yearning for cures for your child and hoping and praying that miraculously your child will one day be free of doctors, tests, hospitals, and pain. My child has Alstrom Syndrom, which is a multi organ failure genetic disorder. We have spent many days and nights at ACH. I hate the fact the ACH (John Hopkins) even has to exist, but in the same breath I am so thankful it does. No child should get sick. I admire you and your families’ strength and how you have turned your love of you child into a wonderful cause for other families. I pray that your hope of a cure will come very soon so no other child will have to endure ALL ever again. God bless you and your family. Jill LoSchiavo

  13. So sorry to ask, but on the donation page, they ask who to notify (required), and want the address, phone, and email. Should that be the Doctor, or the Gilkey Family. Can these items be provided so I can complete the donation?

  14. Laura, I tried to donate in memory of or in honor of but both required your name address and email. Can we get around that step or do you want to post additional info??

  15. Your family is brave and beautiful. Benji will live on in our memories and hearts. My family mourns with yours and rejoices at his bright light he shared, even for a short time. A wonderful idea to have a foundation <3

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