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Adam O'Kelley
Adam O'Kelley
89312
visits
Adam O'Kelley
89312
visits
Adam's CaringBridge
Adam O'Kelley
89312
visits
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My Story

On August 19, 2009, I received the news that I had Cancer.  I have since been diagnosed with AML, Acute Mylogenous Luekemia.  This website has been set up to chronicle our journey (Amanda and I) through this experience.

Don
January 1, 2025
Adam, stay strong!
Ann & Bill Compton
December 31, 2024
Praying for you Adam and your family for healing and peace in 2025.

2024 Year End Review

It was about this time last year that I remember talking with Amanda about the hope that 2024 would be a year of peace for the AOK Family. The last 3 years we’ve had two bone marrow transplants and a 14 month displacement due to a house fire. Everything seemed to be pointing to a year of recovery and low stress, but only 5 days into the year, on January 5th, we found out that my Leukemia had relapsed and we would be battling this for the 4th time. Although the year has been challenging in a lot of ways, we have found a lot of peace in the storm, just not the peace that we thought we’d have a year ago. That’s how God works a lot of the time. He has ways of interrupting your plan for His, because His plan is perfect and ours are often times not. I’ll add some reflection at the end of this post, but let me give some updates first.


Medical Update:

Round 8 went well, my blood counts were slightly better overall than round 7, and for the first time in the trial I didn’t need a blood transfusion. It’s now been two months since I’ve had a transfusion, so the hope is that I’m on my way to being transfusion independent, which is a big milestone. I actually started round 9 this week, and we’ve decided to do the bone marrow biopsies to status the disease every other round moving forward. I didn’t have a biopsy after round 8, but I will in January after round 9 and will update any progress then. We’re still hoping and praying that 2025 brings a complete and lasting remission, but for now things seem to be stable and/or slightly improving, which is the next best thing!


Personal Updates:

Since I’ve been feeling better, I recently started back to work part time with the goal of moving to a more full time schedule in February or so. I’ve been off of work for about 11 months now, but my employer has been very accommodating and has stuck with me. I’ll be celebrating 20 years with them in 2025, and this has been my 4th medical leave during my employment. I’m very grateful to work for such a good company and thanks to my management team for working with me this last year and for my local team who have worked incredibly hard to keep clients taken care of. I’ve been very fortunate in this respect, and it’s evident that God is looking out for our family in this area of our lives.


Also, Amanda recently went back to work at Faithbridge part time. She worked there for about 15 years, but “retired” in 2021 when I had my first transplant. It was going to be too much to be a full time mother and caregiver. But, since I’m doing better, she has decided to go back to what she loves, part time, which has been good for her soul.


The kids are doing well. Aidan is really involved volunteering for the worship team at Faithbridge. He’s really taught himself a lot about lights and AV engineering and has become a little bit of an AV savant for his age! Addison just had her first gymnastics competition since breaking her wrists and finished 6th overall out of about 50 girls. In addition, she was one of the youngest girls in the competition, so a very good result for her first time since the injuries, although she was sad that she didn’t get first!


Interesting Facts/ Observations from 2024:

1. Over 150 Trips to MD Anderson, which is about 12,000 miles driven for healthcare

2. 43 days spent in the hospital 🥴

3. Over 100 blood draws, which probably equates to about 2 gallons of blood given for testing.

4. Over 5,000 pills taken

5. 10 bone marrow biopsies

6. Over 100 chemo sessions

7. 15 blood transfusions

Although very thankful for the awesome medical care, we’re hoping that these numbers go down in 2025!


Quick Reflections on things we’ve learned in 2024:


1. Don’t worry about the little things, and a lot of times the big things too! The bible reminds us on many occasions to not be anxious about anything, and that God’s plan is perfect. I’m a planner by nature, and with my first two transplants there was always a plan and structure to get in remission and aim for a cure. This year has been different, as we are experimenting through this clinical trial. My prognosis was initially poor, but I think it’s likely improved….although I don’t really ask any more. I’m not sure the Dr. even knows as I’m a little bit of a unicorn in how my disease is remaining stable. One day at a time, one step at a time….. this is the peace that I have learned this year especially. Not because it was my plan, but it was God’s plan for us.


2. Showers are overrated. 2024 has been the year of the least showers for me in my adult life, as I’ve been fatigued and haven’t really been too active. I’m not advocating being a slob, but it’s okay to skip every now and then.😀


3. Be Generous…… We’ve had so many people be generous to us as we’ve gone through hardships the last few years, and we are tremendously thankful to every single one. We’ve always enjoyed giving, but even more so in this recent season of our life….. giving is truly better than receiving, whether it be your time or resources.


4. Take time to spend with your family. You never know when the ability to be active with your kids and spouse can be taken away. We are not promised tomorrow, so live in the present.



Wishing you and yours a Merry Christmas and a Happy New Year. We’ll update in 2025!


Stay Rooted,


Adam

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Clinical Trial - Round 7 Results

I had a bone marrow biopsy on Tuesday to status the disease after round 7 of the clinical trial. Today, I followed up with the Dr and the leukemia cells in my bone marrow are at the lowest point that they have been all year. For most of the year, they have hovered between 30 and 40%, but today they were down to 19%!

As a reminder, below 5% is where you can consider being in remission, so we are not there yet, but we are making slow progress. In addition, my other blood counts are remaining stable and I’m not needing blood or platelet transfusions, which is a very good thing. I’m also feeling stronger and have gained a lot of my weight back.

As I’ve said before, this is not a typical presentation of AML, where the disease stays stable for a long period of time. My Dr. is a little perplexed, but we’ll take it and I’ll start round 8 of the trial on Monday.

Amanda and the kids are doing well, and we’re looking forward to the holidays. I’ll update again in a few weeks.

Thank you for your continued prayers and for being a part of the journey with us.

Stay Rooted,


Adam

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Back Home

Amanda and I made it home on Tuesday night after 7 days in the hospital for diverticulitis. It was a pretty easy stay, the Dr. just wanted to get as much of the hospital grade antibiotics in me before letting me go home. As I’ve said before, life with Leukemia and a compromised immune system mean that we are likely to have relatively frequent hospital visits. So, we just keep pressing forward and take one day at a time. I’m actually feeling very good lately, apart from the diverticulitis.

Also, as promised, I’ve included some pictures from the Aggie game a few weeks ago. We were able to spend some time on the sideline pre-game, Addison was able to pet Reveille, and we enjoyed watching the game from a suite. It was a once in a lifetime experience, and a big thank you to The Association of Former Students for hosting us.

We’ll have some updates in a few weeks after round 7.

Until then….Stay Rooted!

Adam

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Another Stay

Adam started round 7 of the clinical trial Monday October 7th and has been feeling well. However, the battle with diverticulitis keeps setting him back. I brought him to the ER on Tuesday night because he was having pain and we got a room around 1:45am. They confirmed it was a diverticulitis flare up and it was a bit larger than the last time he was in. Antibiotics are doing their job and the pain meds are helping. This morning, the doctor said he will be here until middle of next week. The doctor has mentioned potentially doing another white blood cell donation, but waiting on that for now because it is much more complex than a blood donation.

Please continue to pray for this to get under control, for his blast counts to come down (the bad ones😁), for our kids as I go back and forth and juggle all the mom duties, for our minds to stay focused on where the Lord has us and not get frustrated with this setback.

Being in the hospital for days can get a bit boring, but I did bring the switch for Adam to play and football is always a plus!!😁 Thanks for covering us in your prayers!

side note…PLEASE DONATE BLOOD, they are low. It truly does help so many lives!!!

Stay Rooted,

Amanda 🧡

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Round 6 Results - Positive News

Today is the last day of round 6 of the clinical trial that I’ve been on, and I’m looking forward to a week off before starting round 7. As I’ve mentioned before in a previous post, my Dr. gave me steroids a few weeks ago for some inflammation, but we noticed that afterwards the leukemia cells in my blood significantly reduced. Normally, AML is not sensitive to steroids, but there have been some cases that showed some positive results when incorporating steroids. My Dr. was unsure if the steroids were reducing the leukemia cells in my bone marrow, or just somehow blocking them from getting out into the bloodstream. The bone marrow is the source/blood making factory, so reducing the leukemia cells in the bone marrow is more critical than in the blood. I had my round 6 bone marrow biopsy on Friday, so the Dr. prescribed some steroids for me to take on Thursday just t to “see what happens”. Well, the team called me on Friday afternoon and let me know that the leukemia cells in my bone marrow had significantly reduced! They were 40% after round 5, but now have reduced to 25%, which is the lowest they have been since the trial began. 5% or less is considered remission, so we’re not there yet, but we have seemed to make some progress. I’ll be interested to see how he incorporates steroids into next round.

In the meantime, I’ve felt better this round than at any point this year. It’s always better to feel good!

Yesterday, we were able to host a child baptism at our home, and I was able to baptize Addison. It was a very special day, and I’m very thankful that I was able to share that experience with her. We’re very proud and excited about her decision to accept Jesus as her Lord and Savior.

Finally, just an update on the Aggie game that I mentioned a few posts ago. Thank you all for your prayers on this. As it turns out, through some friends and a contact at The Association of Former Students, all four of us have been invited to the Missouri game this coming Saturday. We will have pre-game sideline passes and will be their guest in a suite at Kyle Field. In addition, I’m feeling good, which was my prayer request to make this happen. It will be my kids first Aggie game, so they’ll probably be spoiled moving forward. 😀. We’ll post some pics at the next post.

That’s it for today. The news has been very good lately, so we’ll take it. Thanks for being a part of this journey with us.

Stay Rooted,

Adam

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Hospital Stay

On Tuesday, Amanda had to bring me to the ER at MDA because I had pain in my side and my heart rate was very high. I was admitted on Tuesday, and we’ve been here ever since.

It turns out that I have a small perforation in my bowel (diverticulitis), but it’s not leaking, so that is good. Initially, they were going to try to drain it, but have since decided to just manage it medically with antibiotics. The antibiotics seem to be working so far, and my pain is much better. Hopefully, they’ll let me go home in a day or two.

We’ve learned with Leukemia that a hospital stay every few months is almost a guaranteed part of the journey. We haven’t been here since June, so we’re probably right on schedule 😀. There’s not a whole lot more to update today, other than things are looking better than they were on Tuesday. Thanks for following our journey and I’ll update again soon.

Stay Rooted,


Adam

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Round 5 Results…..Next Steps

We received the bone marrow results from round 5 of the clinical trial last week, and the results are about the same. My bone marrow is still producing leukemia cells, but they don’t seem to be increasing….which we classify as good news, not great news.

However, I’m nearing the end of the first week of cycle 6, and the Dr. decided to add some steroids to my meds for the first 7 days on a hunch, and my leukemia cells in my blood are as low as they have been in 6 months. He’s not sure if this is temporary or not, but it was a nice development. In addition, my blood counts have bounced back higher than they have at any point during the trial, so there seems to be some anecdotal evidence that things are working, albeit slowly. At this point, I think we are going to continue to press on with this trial. My Dr. did say he may look for some other options to possibly help drive a remission, but the downside is that if we do that and it doesn’t work, we may not be able to get back on this trial that seems to be holding the disease at bay. We’ll keep you posted on any developments there. In the meantime, the steroids have me feeling as good as I’ve felt in a while, so I’ll take it.

On another note, we’re entering my favorite time of year. Football season is here, the weather is getting cooler, you can begin to take walks outside, etc. For the last 3 or 4 years, I’ve wanted to take Aidan to an Aggie Football Game, but bone marrow transplants and house fires have seem to have gotten in the way. This is an experience that I really want to have with my son, so I’m asking for prayer that I can be in good enough shape to try to go when it is a little cooler. Since I’m anemic, walking long distances and up stairs can be challenging, depending on the day. I’m also supposed to stay away from big crowds. We’ll see on this one, but I’m hopeful that we can make it happen.

Amanda and the kids are doing well. They are busy with school and extracurricular activities. Thank you for being a part of the journey……..we’ll update again soon.

Gig ‘em Aggies and Stay Rooted,

Adam

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Love Steve and Melanie Zimmer
August 20, 2024
Adam and Amanda, We have been praying for healing every evening. We know that God is in control. Love, Steve & Melanie Zimmer