When we got Jeff’s brain scans back last month, the news wasn’t good.
Although the cancer had continued to spread everywhere else, we were beyond grateful that his brain activity remained stable.
Unfortunately, the most recent scans showed “innumerable tumors” on Jeff’s skull, the dura, and in the soft tissue.
Meanwhile, we are constantly battling his insurance. They are repeatedly denying medications and his Keytruda infusions.
My attention was focused on getting the Keytruda approved when I realized that his radiation oncology appointment had been scheduled for July.
Considering the significant spread, I thought this unacceptable and campaigned to see the RO (radiation oncologist) sooner rather than later.
We met with radiation oncology who tentatively wanted to do whole brain radiation.
Upon further review of Jeff’s brain scans, the RO felt like the soft tissue involvement were the tumors on the dura pressing into his brain as opposed to the tumors originating in the soft tissue. This is “good news”.
Jeff is scheduled to have brain radiation, but the RO will consult with the radiologist to determine if they’ll do whole brain radiation or something more targeted.
Jeff was due to have his 3rd Keytruda infusion yesterday. Insurance denied and his appointment has been rescheduled while they appeal the denial.
Jeff’s brain radiation is due to start this coming Wednesday.
Yesterday, Jeff slept much of the day.
He woke around 6 p.m. and was completely disoriented. He was unable to communicate on an understandable level and was exhibiting bizarre behaviors.
We monitored him briefly to see if his confusion would clear and when it didn’t we headed to the ER.
Initially they thought he had a stroke. Thankfully a CT scan ruled out a “big stroke” or bleed. They said it’s possible he could have had a small stroke, however, they felt the more likely scenario is that the tumors on the dura pressing into his brain caused him to have a seizure.
His language improved slightly while we were in the ER. He’s still very confused, although he knows his name and birthdate, but was unable to remember what month it is.
They also found his hemoglobin had dropped to 6.2. That’s the lowest its ever been.
They admitted Jeff to the hospital. They got him on IV fluids, a seizure medication called Keppra, and he was getting a blood transfusion. (As his levels are so low, I won’t be surprised if he has more than 1 transfusion.)
He sounds better this morning and is eager to leave the hospital. However, it’s clear he’s still cognitively affected. He was able to communicate his strong desires to be discharged, but feels like we’ve left him in the hospital for an extraordinary amount of time and he was still unable to tell me what month it is.
Although he couldn’t tell me the month, he knew enough to deflect the question with humor. When I asked him what month it was, he laughed and questioned, “not you, too?” Bless him, he’s trying.
Despite his lingering confusion, it’s definitely an improvement from yesterday.
We hope to have more of an update on his condition later today. It’s unknown at this time if they’ll keep him another night or not. They were super iffy about keeping him in the first place, which was alarming to us as it seemed above our skill set to care for him properly.
We’re so relieved he’s getting the care he needs currently and hope for continued improvement.
#teamjeffgallagher
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Pancake_Lefse
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Sorry to hear that you don’t have better news. It also irks me that you have to battle so much with the insurance company. When a family is battling a cancer the last thing needed is a battle with the insurance company. So sorry that you all have to go through this. BTW, I love Jeff’s sense of humor. And I love how the family has come together to fight for Jeff. I am hoping for the best for all of you.
I’m so sorry to hear that you’re having to battle the insurance company whilst Jeff is enduring so much. Jeff is very lucky to have you by his side. I hope the situation improves for you all. I’ll continue to keep you in my thoughts.
Sorry to hear about your current circumstances 🙏 I've read your beautiful Bio, Jeff is very very lucky to have someone like you by his side. Hoping the insurance stuff gets worked out quickly. Wish I had something to offer ...
Hoping for improvement for Jeff also. You and Jeff have been on my mind and in my prayers. I know how overwhelming everything has been. But you both manage to stay strong and hopeful. Prayers for continued strength and hope.
Whoah Nelly! Keep the faith Stephanie & Kids! I pray that he can come home soon? But Can he? They want him out , and he wants out . But I’m with you? Is he strong enough? He has been through so much torture . Seeing him in that bed makes me cry . Dammit! 😭I am sorry ! 🙏
Me neither buddy. I have to drive over several times a month and it’s never for cake and coffee or a pleasant social visit. . Yayahahahaya At my Kaiser , tho, they flag your records if you are “ special “ ( a “ croaker “ ) and they take me in first and I do have access to the special VIP oncology pharmacy ( members only … never waiting and they do have donuts and coffee “ ) where I can get my meds ( they stock stuff like Xtandi special for me … ready on demand )
Boy !!! You see Jeff there and you feel such great empathy for him …. I hope he gets out of there quick and is able to convalesce at home …. My worst nightmare is going in and not getting out . I’m rooting so much for Jeff and Stephanie…... tharze no place like home and loved ones ….huh ??
But for the grace of God , there goes I . Jeff is so very young . It irks me to see that! Sometimes i don’t even know why I’m here on this cite now ? There is so much suffering . I’m thinking about taking a break from the mayham? I have 50 guys that are Mia over these past years . I don’t know how they are .?. After another 50 left us it’s a bit morbid .. it is like a war ,us against the pc machine . F n bastard!
I really really pray things will improve quickly. I know it is a long shot and I don't even know if it is relevant in Jeff's case but can this be of any help at Stamford:
Thank you for the update Stephanie, we do appreciate it. I am hoping for positive progress. My best friend just got diagnosed with stage 4 squama cell, and his insurance company first denied his biopsy, then denied his imaging to see where else his cancer his, now they denied his doctors first two choices of oncologist. His doctor fought with insurance companies every time and is winning the fights, he is now going to md anderson in San Diego. So you guys are not alone in this fight.
We are all pulling for Jeff.
Have your MO try to get keytruda from Merk.
The Merck Patient Assistance Program provides certain Merck medicines free of charge to eligible patients. The Merck Access Program representatives can refer you to the Merck Patient Assistance Program. merckaccessprogram-keytruda...
Boy !!!! Jeff is tough as shoe leather, and “ you “ .. tough as army combat boot leather. Seriously …. But you know what …… Jeff has been taking a beating lately and is still in there fighting like heck. Gotts to admire his determination…. Both of you. My kind of guys.
I’m hoping Jeff will continue to improve and you can get him back home real soon, where his “ stuff “ and loved ones are … his good ole familiar , comfortable, surroundings.
Therze more gas in that tank for sure. Your story is so very compelling… love you guys and waiting for your next update , from home. ( hopefully ).
Poor Jeffrey...... has to fight his ailments as well as the Insurance company.
This is what I would do, I would call the Ins company and speak to someone regarding your situation. I would get that persons name if he/they do not wish to comply with Jeffrey's needs. Make sure you get that person's surname as well as their employee number (ID). Then inform that person that you will write an editorial to the local newspaper explaining how inhumane they are and you will mention that persons name in your editorial. (Make sure you only tell the truth). Mention to that person you will send a resentment letter as well to the CEO. Go for the jugular. (say hello to Jeffrey for me)....
As difficult as your posts are to read, I appreciate your candid descriptions of what may be facing all of us on this sight at some point in the future. I for one, am still in the "hey, I am going to beat this" mode and don't want to look too far into my future. Thanks for keeping this reality in our view. I hope that we can share our accumulated brotherhood of strength with you and help you get through this ordeal.
Love your perseverance, focus and dedication. BE strong Steph. Best to Jeff.
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MRI prior to Radiation Treatments + HT 
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Radiation treatments.
Whole Brain Radiation
