Our family is going through a medical crisis. Sadly, this is our second (brain tumor) rodeo. This time came with a surprise bonus pack of MRSA blood infection and the edge-of-your-seat possibility of organ failure!

Backstory:

A few years ago Chuck went suddenly deaf in his right ear. An MRI revealed the acoustic neuroma. He had surgery July 2022, developed a cerebrospinal fluid leak (a.k.a. CSF or "brain juice"), had emergency corrective surgery, the leak persisted, and finally the leak was corrected with nasal surgery. After that month-long "festival of surgeries" at Duke he had a long recovery, lost 100% of his hearing on the right side, and has permanent balance/mobility changes. One comfort we clung to was that this type of tumor is SLOW GROWING. Plan of action: monitor with MRIs periodically, radiation if necessary for the tiny sliver they couldn't remove without damaging the facial nerve. At first they did MRIs every 6 months then switched to a year apart.

This year:

In April we learned that in a span of 15 months the tumor sprouted back to 80% of its original size. The doctors were shocked. There was discussion about radiation daily for six weeks, but the surgical option won out. They scheduled the craniotomy for September 10th. In the grand scheme of life 5 months is nothing, but when you have a growth pressing on your brain (and the dread of going through this AGAIN) 5 months is a very long time.

Summer fog:

We watched Chuck become miserable as the symptoms worsened. Inescapable headaches and brain fog. Fear and dread of surgery looming. He doesn't whine. (I tell him he doesn't complain enough!) He's been through so much, and it hurts to watch your person hurt.

September:

The big day arrived. Friends and family offered prayers and support. Everything went night and day better than 2022 -at first. He knew who he was and where he was. He was in less pain post-op than the previous 4 months! His walking and balance was great- Physical Therapy bragged on him! Three days after surgery they discharged us. I drove him away from the hospital in shock and so grateful that things were going so well!

He did okay at home for a couple days then Monday night he got a severe headache (like I hadn't seen since 2022). Tuesday afternoon he started leaking clear fluid from his incision. I was talking to Duke and making plans to take him back to Raleigh that evening. Around 4:30pm he was sitting on the couch and began convulsing and bleeding from the head. I called 911. Both kids saw him like this and panicked! I thought he was very possibly dying in my arms.

Ambulance ride to Mission. Mental confusion but vitals stable. Fever spiked that evening. They found infection in the blood. CT and MRI. Started antibiotics. Kidneys very weak and not responding well to the antibiotics. Confusion. Walking and balance compromised by fatigue. Spent nearly 24 hours in an Emergency Room due to lack of beds. Then a transfer unit for a couple days before a regular room. After days of antibiotics they didn't have source control of the infection. Hospital transport took us to Duke Durham for Incision & Drainage wound washout. Durham didn't have OR space, so the next day they transported us to Duke Raleigh and finally performed that procedure.

After 2 weeks of living in the hospital with him and my sister tending to our kids and pets my other sister came and got me from Raleigh (since I left home by ambulance and was now 5 hours from home). A few days later they planned to discharge him, but he was leaking CSF from the incision, so they whisked him away to an OR and placed a lumbar drain. I knew this meant at least another 2-3 days of monitoring the drain. For one week I stalked him via the DukeMyChart app, because it was only occasionally that I could reach him on his cell phone. It felt so wrong to leave him there alone, but he was getting the care he needed and it was good to see our children.

October:

Finally, on October 1st I was able to drive to Raleigh and collect him. It was so good to see him and talk to him- he seemed more like himself! He had been telling me that he couldn't walk and was having to use the walker that last week, but I didn't see what he meant until we got home that night. With him holding the walker and me holding him I thought he was going to collapse. Barely got him from the car to the couch. For days he has slept day and night and only moves from the couch to use the bathroom.

Completely terrified and overwhelmed as a wife and caregiver. Talking to his doctors. Asking for him to be reassessed for Physical Therapy. Having to learn how to do his home infusion of antibiotics through the PICC line for SIX WEEKS (thanks to the infection involving the bone plate at the surgical site). Also learned he had barely eaten in several days, so I'm making sure he at least has Ensure, yogurt, and whatever he can get down.

I don't enjoy asking for help, but this is pretty major. I saved up all the PTO I could for this purpose, but now it's gone and I'm having to do unpaid time plus pay to keep my insurance active. Bills roll around every month in sickness and in health. Chuck is facing a slow recovery and follow up treatment including radiation for the remaining bit of tumor. The surgeon explained the anatomy involved and why he can never surgically remove 100% of the tumor. Hopefully one or more doses of radiation will prevent this from happening again in a few more years.

We trust in Jesus and know that He is not surprised by any of this. He understands our weakness and our fear. He has a plan for us.

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26 Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. 27 And he who searches hearts knows what is the mind of the Spirit, because[g] the Spirit intercedes for the saints according to the will of God. 28 And we know that for those who love God all things work together for good,[h] for those who are called according to his purpose. Romans 8:26-28 ESV

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TLDR: I thought he was dying multiple times. I'm dipping into unpaid time with work. We are all traumatized. Bills still need to get paid. Trusting in God's provision. Grateful for your help and continued prayers.