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Caleb Rhys O'Brien - Journal

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Posted 2022-12-28T03:53:35Z

Caleb Rhys OBrien update 12/27/22

Well today was the day! CAR-T therapy done and over with and the infusion took all of 8 minutes. From 12:10pm to 12:18pm today, we watched (as Caleb took a Benadryl nap) the cells that will hopefully cure Calebs cancer, be infused into his body. What has taken months of planning and discussing, obsessing over whether this was the right choice, debating with ourselves and Calebs medical team, not sleeping, feeling angry and resentful that this is where we are, feeling grateful for the miracle of modern medicine, being ever so hopeful....its just all the things, it all came together in 8, rather uneventful, minutes. Life is funny like that.[...]

Posted 2022-11-15T04:35:41Z

Caleb update 11/14/22

It has been a long month of waiting, which is never easy. Caleb finished his 28 day infusion of Blinatumomab on November 2nd, and had his follow up bone marrow biopsy on November 7th. We are so happy to share that he is officially in remission!!! This is exactly what we were hoping for and we feel very grateful to receive this news! [...]

Posted 2022-10-12T01:30:57Z

Caleb Update 10/11/22

After 7 weeks, we are home!  Well, for a little while.  The last few weeks have been very eventful.  Last week, on Monday they placed an apharesis catheter in Caleb’s neck. This was then used to collect his T-cells in case we need to go to Car-T therapy in the future.  Once they collected enough cells, they removed the catheter later that day.  Totally nuts, but we are glad they were able to do it.  On Wednesday, he started on his immunotherapy, Blinatumomab, which is a 28-day continuous infusion.  It has a great success rate of getting patients into full remission, so fingers crossed.  We had to stay in the hospital for 3 more days so they could monitor him to make sure he didn’t get any side effects from the drug.  Caleb did spike a fever on Friday, but was fever free on Saturday, so we were able to go home on Sunday! He is doing well on this therapy.  He gets fatigued much faster than usual and still has a lot of weakness in his legs, but overall feels pretty good.  We are home most likely for the next two months, returning to the hospital twice a week to change his med pack and get blood work, unless he gets a fever and then we are admitted again. Once this first Blinatumomab cycle is over he will have another bone marrow biopsy. The hope is that he is in full remission.  If that is the case, we will figure out the best course of treatment moving forward.  This will most likely lead to Bone Marrow Transplant in one way or another. So it is still a long road ahead. But, we are all hanging in and continuing to try to take things one step at a time, which is not the easiest thing of course. But, being at home is really helpful.  We have never been so grateful to do dishes! Thank you all so much for your continued support.  It means so much to us and  we feel the love coming our way every day. [...]

Posted 2022-09-25T17:07:36Z

Caleb Update 9/25/22

Last Wednesday, Caleb finished his re-induction protocol and had a bone marrow biopsy to see if there was any cancer left in his bone marrow.  Unfortunately, he still has 0.7% Leukemia cells in his marrow, so he is not in remission yet.  This was definitely not the result that we had hoped for.  What this means now is that the doctors are recommending we move toward bone marrow transplant at this point. [...]

Posted 2022-09-19T02:43:24Z

Caleb Update 9/18/22

First, we want to say thank you so much to everyone who has sent us texts, emails, messages, phone calls, cards, gifts, pictures, donations, thoughts, prayers and just about anything else positive we can think of. These last couple of weeks have been some of the hardest of all of our lives, and we can’t tell you how much it means to us that we have so many people in our corner.[...]

Posted 2022-09-07T01:29:22Z

Donations (link is at the bottom of this page)

Dear Family and Friends: 

We are starting a fundraising effort to benefit Colleen, Mike, Caleb, and Felix.  As you may know, Caleb was diagnosed with relapsed Acute Lymphoblastic Leukemia on 8/20/22 and is currently hospitalized for the next several weeks for induction chemotherapy. After his induction is complete, his overall treatment course is still uncertain but inevitably will be a long, difficult road. During this time, Colleen and Mike will be by his side, supporting him in every way possible. This situation unfortunately requires their family to be separated, with Felix being cared for by family in Pennsylvania and Delaware. As you might imagine, there are significant costs associated with sustaining two separate living environments in addition to those associated with Caleb's hospitalization and cancer-directed treatments. [...]

Posted 2022-09-02T01:25:36Z

CALEB UPDATE 9/1 - from Colleen and Mike

Our little man is hanging in there.  He has felt very sick this time, having a lot of trouble eating and SUPER low energy. The good news was that they did not find any leukemia cells in his spinal fluid, and it looks as if his Leukemia is genetically almost the same as last time, with very little mutation. As far as long-term treatment plans, that is all still very much in a wait and see phase.  We will not know what the next step of the protocol is until the end of this 28 day re-induction course of chemo.  If he is in remission, and there is no trace of cancer in his blood at that point, that gives us the most options for treatment.  [...]

Posted 2022-08-23T02:50:06Z

From Mike and Colleen 8/22/22

Hello all, 

Below is an update from Mike and Colleen that we all hoped to never have to post.  This is all very new, so we're still figuring out the logistics of what they all will need and how best to support them, but I will absolutely post here once we have more info. Thank you all for your kind words, prayers and healing thoughts. We are so grateful.[...]