Dylan had an MRI on Wednesday – the pons is stable; however, nothing could explain some of the new symptoms she’s having. Her oncology team believes it to be radiation effect and pseudo-progression. Jeff and I aren’t really buying that, and time will tell. We know her cancer is diffuse, so our hunch is that it’s active somewhere else. She’s slowly losing the ability to use her left arm. With her right arm not working, this is creating quite a bit of frustration for her. Luckily, she’s still able to eat & drink (with help), swallow and still be pretty sassy!
Because the CAR-T trial in Seattle isn’t enrolling DIPG patients anytime soon, we are feeling like we need to do something. We are heading to Mexico next week to try a treatment in Monterrey. We’ve spoken with several families who have gone and, to be honest, we have nothing to lose. The ultimate hope being that this buys her time to get to the trial.
Things have felt heavy lately. I don’t know if it’s because of the holidays or because we see her slowly getting worse and know there aren’t many treatment options left. I still believe in choosing joy, but some days it’s almost impossible. We are almost at 16 months post diagnosis, and you’d think things would be easier, but that is not the case. It never gets easier. Every day, it feels like there is an elephant on my chest. The pain can almost be too much to bear. I have conversations with people and I’m only halfway present – part of my mind is always on Dylan. I am thankful for the time we’ve had, knowing many DIPG families get much less. But, it just plain sucks. I still find it surreal that this is my life. I don’t believe this “happened for a reason” or any cliché like that. As hard as it is, I will continue working to choose joy and hopefully find meaning in the pain. As Jeff recently heard, you can become bitter or you can become better. We are both choosing better.
Oh Casey…. that last statement is one I’ve heard recently too and it’s definitely a choice anyone going through any sort of life altering experience has….. you guys are so strong to choose “better”. ❤️❤️❤️ We are all here to support you anyway we can. Will be thinking good thoughts and safe travels for your Mexico trip… hopefully that Seattle trial can hurry up and get started already…. love you
Thank you so much Katie ❤️❤️❤️
You are amazing! Sending love and prayers with you to Mexico ❤️
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Hoping, praying, wishing and fingers are all crossed that Mexico’s treatments gives you more time and some symptom relief. You’re on my mind every day. Your love, fight and spirit is beyond inspiring. Love you! ❤️
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Casey, we haven’t met but I went to school with and know your lovely sister, Lindy. I’m so glad she invited me to follow this blog. I’m so incredibly sorry for what you and your family are going through. There aren’t any words, there’s no one else who can bear your burden but you. I know that elephant on my chest feeling, although I only had to endure it for 6 months. I lost my husband in a short brutal battle with melanoma 7 years ago. I won’t pretend it’s the same as fighting for your child’s life, as I’m sure as a mother that brings a whole other element of pain and torment. I too refused to believe it “happened for a reason” or any of that bs. But I did become a bit cynical…not bitter, but a little cynical. But still a better person, I think. I don’t really have a point here except to say you’re amazing and your family has touched my heart and soul. I always appreciated hearing from people I didn’t know who knew my husband’s story, so I hope it does the same for you. Wishing you as much peace and joy as you can possibly squeeze out of the holiday season. Good luck in Mexico. I think that’s awesome you’re pursuing different options, because why not? Good luck and know that you’re loved.
Jessica, thank you so much for commenting and following. I have thought about you and Mike often on this journey. I was very impacted by his story and your open and honest writing about it. Particularly as I see the stress that Casey is under, I now appreciate so much more what you went through as his caregiver. I admire how you live your life, seizing the day and seeing the world. I see through you that it is possible to have joy again. It may be different, but it seems to be there. Thank you for reaching out. ❤️
Thanks Lindy. You are so sweet. There was always something special about you. Glad Casey has you and your other sister.
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Thank you so much for your comments. I followed your journey through Lindy and admired your courage and willingness to tell your story. ❤️❤️❤️
Your words brought tears to my eyes … I pray for more “joy” for you and the family, relief from that heavy feeling and that the Mexico trip goes well with positive results. You guys are in our thoughts and prayers. ❤️
❤️ Thank you, Jean.
Thank you so much- I appreciate your support so much ❤️❤️
Thinking of you always. Praying every day. Wishing for more moments of joy than pain. Love you!
Thanks so much Con ❤️❤️
Thinking and praying for you all. Hoping that treatment in Mexico can provide positive results and symptomatic relief. Always here for you all xxx
Thank you ❤️❤️❤️
No one wants to have this conversation, about any of it. No one wants to think of the day to day struggles you see and the shadowing pain it brings. But you are so strong for saying it. For showing us who don’t see it but fight from the sidelines. We are DIPG strong and Dylan is a true warrior. We are all choosing joy with you and look forward to the next update ❤️
Thank you so much Jasmine ❤️❤️❤️
Casey, all I can say is that you are amazing!!! Safe travels to Mexico. I will be thinking of you all and sending love! ❤️❤️❤️
Thank you so much Abby ❤️❤️
Hi Casey & family,
We are Connie & Katie’s Aunt Deann & Uncle Steve. We have prayed for Dylan & your family since the beginning. And we dont give up hope. You are a brave & beautiful family & are so wise in reaching out for any help you can get. We will be praying for you on your Mexico trip. We are praying for peace for you & know you are loving & appreciating every precious moment you have with Dylan. Love to you all.
Thank you so much. ❤️❤️ your prayers and support are so appreciated!
Casey, this is Janet Henson, Ernie and I use to live in Long Beach. I just wanted you to know that you and your family have been in my prayers and will continue to be. I pray that God will shine his light upon you and Dylan and may his healing powers be with you.
Thank you so much for your prayers and support, Janet! ❤️
I have experienced great loss of many family members and friends to cancer. However, I cannot fathom watching my own child battle the dreaded disease. The loss you must experience in a day to day, hour by hour and minute to minute basis must be so painful. I can see how this would make you bitter.
However, for you to chose to make things better, instead of being bitter is a testimony to your beautiful Dylan. How lucky she is to have you and Jeff as parents. How blessed she is to have Mason. And, how wonderful it is that she has an entire tribe of family and friends who love her and pray for her daily.
The grace you have shown through this fight leaves me speechless.
We continue to send all of our love to your family and to all others fighting this horrific disease. Safe travels to Mexico. You will be in our thoughts.
Thank you so much, Michelle. We so appreciate all your love and support ❤️❤️❤️
Your courage in sharing all of your stories here is amazing and humbling. Your family is one I’ve always admired and this shared project demonstrates the closeness and support that you all have. I’m grateful that you all have each other on this journey. Sisters are the best (but don’t tell mine I said that :).
I ran into a bunch of my old school stuff from Kent View last week, Casey, and saw you and I and wow how young we all were. It made me laugh… and cry… so many swings life has thrown at all of us. The drama of friendships, classes, chasing/being chased my boys on the playground… and Mrs. Stalder!
And yeah. It totally &#^$ing sucks… sometimes far more than others. I’m glad you have these two amazing sisters and your wonderful parents. I find that ‘better not bitter’ is a hard choice sometimes, and it’s not intuitive, but very deliberate and takes a lot of work. It isn’t seeing the best in terrible things, but a choice to go on, take care of things, and figure out a path through it. It’s OK to be bitter, too, in those moments when it’s too much to be better.
Big, huge, bear hugs to all of you.
Thank you so much Leslie- appreciate your message and all your support! ❤️And yes, Mrs Stalder! 😆 lots of memories from that class and kentview!!