Dylan Update 2.12.20

We spent last week in Mexico and Dylan received her 3rd treatment there. She had a rougher time with the treatment this time. They used the ommaya catheter and she seemed to have more of an inflammation response – headache, fatigue, etc. The travel was harder on her as well.

DIPG warrior Dylan sits with cat

She also began to complain of some back pain, so we requested a total spine MRI. She had that done earlier this week in Portland and I am sad to report that the cancer has infiltrated her spine. At this point, we have decided to stop treatments and focus on keeping her comfortable. Hospice will be starting soon and her pain will be controlled. As devastated as we are, we both know this is the right decision for Dylan. Her poor body has been through so much. We just hit the 18-month mark, and I am thankful for the time we have had with her.

Dylan will turn 6 next week, so we plan on celebrating the heck out of her and surrounding her with so much love for however long she has left with us.

Thank you so much for all the love and support shown to us over the last 18 months. I know you will continue to send your love, prayers and good thoughts our way and I appreciate it so much. If I am not as responsive, please respect that both Jeff and I are focused on as much quality family time as possible.

“If it weren’t for cancer, my life would be perfect. But if it weren’t for cancer, would I even realize it?”

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18 thoughts on “Dylan Update 2.12.20

  1. WHat a lovely note Casey. I am so sorry you all have to go through this difficult time. DYlan is lucky to have you all to support and love her. GOd will give you the strength you need. THe picture of Dylan and the cat is so cute!! Pray for you every day. TEll Jeff and Mason, “cookies on the way” LOve you. P and F

  2. You are in our thoughts and prayers . We lost our sweet daughter at the age of five after seven months of treatments to no avail. We spent our last two months with her peacefully at home loving her and spending all that precious time with her. The day she died she thankfully went into a coma and passed it seemed to us without pain. We miss her everyday sine July 3, 1976. We still do . Strength and courage when enough is not enough and will not be enough. Love your courage! ❤️🙏🏻

  3. You have such a wonderful loving family to help you through this – but we are so sorry. It is hard to know what to say. We wish Dylan a happy fun filled birthday.

  4. No words are adequate. Your focus is as it should be, on Dylan. The rest of life’s distractions can wait. I pray that each moment she has is filled with only love and as much fun as she can handle. I know that this birthday celebration will be like non other. My prayers are that almighty God wraps His strong and comforting arms around each one of you, delivering peace and comfort and strength and understanding. Love you all.

  5. May comfort and love fill your home! God is with you. Thank you for keeping us updated on your families Journey. I’m sad this part is here, your outlook will certainly grant the much needed quality time your beautiful family needs during this time. Love you Dylan and family! May grace follow you for the rest of your lives. ❤️

  6. My thoughts go out to you and your family…I’m so sorry you have lost your fight with this monster..my your baby girl be at peace and out of pain…bless you all

  7. Thinking about your beautiful daughter and family. Dylan is a true warrior. I am so sorry for the pain.

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