Caleb Rhys O’Brien Update - 8/19/23
Hi All,
We are truly devastated to have to write this update. On Wednesday 8/9 after Caleb’s routine bloodwork, we found out that Caleb’s CAR-T treatment was starting to “wear off”. This is not ideal, because the goal is to make it at least 1 year out from the infusion with the CAR-T working as it should. He had only just passed the 7 month mark. After a bone marrow biopsy this past week, we received the news that his cancer has come back. There is technically less than 0.01% leukemia in his marrow right now, but this is unfortunately still considered a relapse. After speaking to his team of doctors on Thursday, the plan now is to re-infuse him with a second round of CAR-T in the next 2 weeks. They will then do another bone marrow biopsy in a month to make sure that he is back in full remission, and we will then move immediately into Bone Marrow Transplant in October. The reason that they plan to re-infuse the CAR-T is that he needs to be in complete remission again to move forward with the transplant.
We will once again be staying down in DE for the month of September during the CAR-T infusion, and then we will be inpatient at the hospital for at least 2-3 months for the bone marrow transplant. Ideally, he will respond well to the transplant and we will be able to come home to finish out his recovery.
The transplant will require us to basically be in a bubble for about 6 months as his new immune system recovers and gets stronger. There is a whole scary list of potential side effect and things that come along with Bone Marrow Transplants, but we have been told that we have some good potential bone marrow donors for Caleb who are a strong match, so hopefully they pan out. If so, the closer the match, the better the chance that the transplant will be successful.
We are obviously completely gutted by this, and are still trying to wrap our brains around it. It is even more overwhelming that it happened almost a year to the day from his last relapse. It feels like some cruel joke. It is very unlikely that he will be able to participate in person at school for this entire upcoming school year at this point. So, once again, no Kindergarten. The plan now is to work with the district and the teachers that they have at the hospital to help him be ready for 1st grade next fall. They have been wonderful and very supportive so far, so we are grateful for that.
One thing that we can say for sure is that the incredible support we have from our amazing family and community of friends makes it possible for us to continue to push through. So, whatever your thing is - prayer, love, healing energy, or all of the above - please keep it coming. We can feel it and we will take it all.
with love,
Mike and Colleen
Comments (25)
It's hard to know the "right" words to say....just sending all the love in the world to you all🫂❤️
Sending you strength & love. Know that you have a million hearts in your corner and we are all sending love to Caleb as he undergoes the treatments and continues to battle. 🩵
I have no words, I’m just sorry this is a roller coaster you are still on. I know I’m far away, is there anything I can do to help? Do you want additional people to get tested for a bone marrow match?
This is frustrating news but we are keeping the hope strong and rooting for Mr Caleb! Sending love, light, strength, and positive energy.
Am sending so much love. And ugh the feeling that this is absolutely not fair. I am 4.5 months out from my bone marrow transplant and am happy to talk more about how it went, the ups and downs, and anything else you wanna talk about. But mainly I send you patience and strength. It’s such a marathon. As much as we want it to be a sprint.
This is truly a lot to bear. Please know I'm praying for strength for your whole family and healing for Caleb.
I’m so sorry. Sending strength and love to your family!!!
Sending all the mighty vibes for strength, love, hope, and healing to Caleb and his awesome family and friends my heart can hold.
I love you and your family. Holding you up to Something More of love and light. And, praying for Caleb and each one of you.
Mike and Colleen - I am so sorry to hear this! Sending you so much love, and keeping all of you in my prayers.
I am so sorry to hear this, but sending so much strength and love to Caleb and all of you.
I am holding you all in my heart. All my love coming to Caleb and your entire family! ❤️❤️
Mike and Colleen, we are so sorry to hear this news. Please know that we are sending positivity and love your way for Caleb and the two of you. Keep the faith and stay strong. Caleb is blessed having the two of you as parents. Stay well and keep the faith.
Colleen, Mike, we are so sorry to hear this news. We can' begin to tell you how distressed we are for all of you. We hope this next step works well. When I was reading about Car-T, i found an article by a young adult, who talked about how many rounds of this he had to have as a kid and even teen. So it happens, again and again, but it keeps going. Are hearts are with you as you trudge forward... Love, Deb and Carl
I’m heartbroken to hear this and don’t even know what to say other than I am and have been following your family’s journey and am so rooting for you. Caleb is lucky he has such a loving and supportive family. Oh how the world is not fair. My heart is with you
Wish there was more we could do other than say we send our love and prayers. Thinking of you all during this incredibly difficult time.
Sending you all love
I am so sorry to hear this news. Caleb and your family are in my prayers. If you need anything, while here in Delaware please reach out.
Please know that I’m holding Caleb and all of you in warm thoughts of comfort and prayers for complete healing. Don’t hesitate to call for anything while in DE. Surrounding you all with strength and love.
There are no words I could say. I will continue to pray for you all. Please let us know if you need anything and I know this team of warriors for Caleb will be here. Hugs and love always.
Mike and Colleen, I am trying to find the right words to say but I know there aren’t. This blows, plain and simple. But you have a plan and please know you have an enormous cheering squad behind your amazing family. Sending love and light and healing vibes. And if you need some pillows to scream into just shout ❤️
We will never stop sending Caleb healing energy. We are so so sorry about this news and hope it's only best possible outcomes from here on out. You are so loved and we are thinking of Caleb SO often and will always be here for whatever you need. <3 -Jenna + Matthew + Beef.
I am so sorry for all that you are facing. You and your family are in my thoughts and prayers for healing for Caleb, and for strength for your entire family.
You are all in my thoughts and prayers! Xoxo
Robi and I are sending our love and all the healing energy we have to Caleb.