ICU day 8

Cleared to leave ICU today, Susan moved to the neuro floor this evening when a bed became available. She’s penciled in for surgery tomorrow as an add-on to a full calendar; and unless there’s a reasonably early opening, they’ll defer to Friday.

The neuro team decided to internalize her lower shunt line by sterilizing and tucking it away under her skin. It’s actually still blocked and not functioning, so this offers the least amount of disturbance. If she needs a new shunt in the future, they’ll remove the old one during that surgery. I also consented with the vascular surgery team to implant another power-port catheter. They expect a routine procedure.

Susan has been making great progress in recovery, so we’re hoping the trend continues when she gets to acute rehab. Depending on the timing of surgery and her status afterward, she could be transferred on the weekend, perhaps as soon as Friday.

It’s been wonderful to see how some of the ICU nurses who’ve attended to Susan over the past week like to come in and visit her. They’re enthralled with her joy, her smile, and her sweet nature. Tonight, Paolo told Susan she’s the sweetest lady ever, “no joke.” Earlier, Stella said how amazed and thrilled they are to have a GBM patient who’s nearly a six-year survivor and who’s making headway towards home. Too often, brain cancer patients come to ICU with advanced disease and poor outcomes. It must be satisfying to have patients with good results.

I wrote recently about fearing God for his power and enjoying him for his love. Today I read a devotional comparing the fear of the Lord to our natural fears. There’s a proper fear of the Lord in the sense of respect, like being afraid of offending your parents or another person you admire. We must learn to fear God; but the fear of the Lord is unavoidable the better we know him.

Of our many fears that don’t require much learning, perhaps our greatest is death. It makes sense. We were meant to live. The idea of “game over” is scary. But knowing God – and properly fearing him – means our fears have context. Just as everything we place under his dominion becomes rightly ordered, so does the realm of fear.

If God himself becomes our greatest fear, all others become lesser, even small. Even death. As odd as it sounds, the fear of the Lord becomes our ultimate comfort. Like a frightened child who runs into the arms of a strong and loving father, each of us can take refuge in the shadow of the Almighty, where he welcomes us.

I have small fears about Susan’s surgery tomorrow, about more complications, about her dying. We gave them tonight to the one we fear more. We asked God to guide the surgeons’ eyes and minds and hands, and we asked him for a good outcome. We thanked him for his love and faithfulness, and told him we appreciate his power and his peace. That’s it. It feels good to leave our fears with God because he can handle them better than we can.

ICU day 6

Susan’s recovery in ICU continued today following a restful night. When her heart rate dropped to the low 40s this morning, her nurse was concerned that hydrocephalus had returned and requested a CT scan. The results were actually outstanding – no hydrocephalus and less blood. The doctors were wondering where it all went; but they might understand if they knew how many people have been praying. Now we can say prayers of thanks for such good results. The scan still shows some swelling, so Susan will need to remain on elevated steroids for now.

The neurosurgery and vascular surgery teams are coordinating their plans, which may still happen together in the OR. The neurosurgeons will sterilize and internalize the drain they removed on Friday rather than either pull or replace the entire shunt. With her VP shunt enclosed but not operating, it’s won’t become clogged again with clotting blood in the short term, and won’t need to be completely re-implanted if she needs it in the longer term.

Next, the vascular surgeons will revise Susan’s power port either during the same procedure tomorrow or perhaps Wednesday, if the shunt procedure happens at bedside.

Meanwhile, back to brain cancer treatment, Dr Nghiemphu visited us today and is both pleased with Susan's status and eager for her to resume chemotherapy when she can handle it. We're bumping next week's scheduled MRI and oncology visit to allow more time to heal, so we'll get back to clinic on April 10th. We'll be prepared to begin chemo again if necessary. 

In her occupational therapy session today, Susan showed good strength in her legs and improvement in her arms – encouraging signs as Susan edges back to rehabilitation. The therapists here will recommend acute rehab once again, so we hope insurance approvals will not be delayed following her prior false start.

We thank God for Susan’s progress in recovery, for her hemorrhage and hydrocephalus resolving so well, and for God’s favor on us during this episode.

ICU day 5

Sunday in ICU was another restful one for Susan, who didn’t fall asleep until 4am again. Since her wakefulness might be due to round-the-clock interruptions for neuro exams, meds, and blood tests (ya think?), tonight she’ll be on “sleep hygiene.” That means they’ll keep interruptions to a minimum. I like to make fun; but they really do a great job here of balancing treatment vs patient needs. Hopefully, she’ll get better rest. 

To add to Susan’s progressing recovery, our buddy Chris removed her EEG electrodes today. We’re now well-acquainted with the EEG guy who set up her first EEG in December, her second in February, and removed the third today. Another hospital pal – he’s one of ten EEG guys here, so having him get Susan again is kind of a kick. Also today her CSF drain started working, the previously clogged line they extracted on Friday. I’m not sure why it’s working now, but that’s okay. I’m also not sure how getting her brain drain working will affect timing for surgery – I just know there’s no word yet on when she’ll go to the OR. 

Yesterday was our 28^th anniversary, so we celebrated the way you do in ICU, without flowers. Whatever. We just go with it. It’s ironic to be here at UCLA since my school calendar when I attended here dictated our wedding date. We felt the fall of 1984 would be too soon to pull off the wedding, and were too eager to wait until the summer of 1985. March 23, 1985 followed my final exams and commenced spring break, so that was the day. 

Sometimes I’ll hear a guy refer to his wife as his “ball and chain.” My version of that sad and foolish view is that Susan and I have a ball being together and treasure a long chain of experiences as husband and wife. We thank God often for the gift of life and for the gift of each other. We sensed his hand in bringing us together and in calling us to spend our lives as one. He’s blessed me beyond belief with Susan.

It’s been fun to see how the staff here reacts to us. Since healthy, long-lasting marriages now are sadly rare in our culture, people are encouraged to see a couple who actually are in love, happy, stable, and all of that. To us, it’s neither odd nor complicated make a sincere commitment in marriage and keep it, so we’re glad to share what that’s like. I’m thankful I could wish Susan a happy anniversary yesterday. I remember hoping to reach our 25^th, so it’s wonderful that we’ve banked even several more years.

ICU day 4

Today has been a quiet day for Susan, who got some needed rest after being awake for most of the night – probably because of an increased steroid dose. I, on the other hand, did not increase my steroid dose and got some good chunks of sleep in while splayed out in the recliner next to Susan’s bed.

We enjoyed a late-morning visit from Susan’s dad, brother and wife, and pastor. We prayed and chatted and prayed again. I filled them in on the latest events and plans and identified some of her tubes and medical bits. They were relieved to see her looking good and alert.

Later, Susan’s wonderful nurse arranged for a visit from a therapy dog named Bella, who arrived after I stepped out for lunch. Susan had been deep asleep, but fully awoke and interacted with Bella. It’s been hard for Susan to wake up at times, so this was a good sign. She loved having the dog visit and petting her soft fur. 

The level of care in ICU is amazing. There are just two patients to each highly-skilled nurse, who is stationed to observe both at once. Each of Susan’s nurses has been responsive, sharp, and caring, a fact that put me at ease right away when she was admitted to the unit in such need. To have a quiet weekend under their care after such an active first several days feels like progress.

The other day I thought about the nature of God, grateful that he is both supremely loving and all-powerful. If he were so loving but lacked power, I suppose he’d be the most cuddly wimp we could know. If he were all-powerful but lacked love, his terror would consume us – if we were allowed to live at all. I realized it’s right to fear God for his power and enjoy him for his love, and to thank him that he’s complete in both. He’s been that for us this week.

Stabilizing, waiting

We’re glad the intensity of the past several days has lifted as Susan remains under watch in ICU. The big events today were a plan, a report, and a test. First, the neurosurgery team will observe her status this weekend since she hasn’t had any fluid drained from her brain since Wednesday. They’re watching in case her status declines, which will prompt them to place an external drain and relieve pressure. In any case, they’re talking about doing surgery Monday or Tuesday to remove non-working hardware and implant a new shunt and power port. 

Second, I learned that yesterday’s MRI showed no additional bleeding, but did show quite a bit of blood, swelling, and increased contrast to indicate tumor growth. But according to Susan’s neuro-oncologist, it’s hard to say how much is tumor growth vs contrast solution reacting to blood. No matter what, Dr. Nghiemphu is eager to restart chemotherapy as soon as Susan is able. 

Susan's pal Brobee for hand therapy.

Third, Susan had about a dozen leads placed into her scalp for a continuous EEG that monitors her brain waves for seizure activity. She handled the painful procedure like a champ and now has a lovely crown of electrodes. She’s had some spacey episodes that seem seizure-like, but none where she’s been unresponsive as with last December. The EEG will record all seizure activity observed and unobserved, so we’ll know those results later.

As of now it looks like Susan will be in ICU until the middle of next week or at least a night or two after her shunt+catheter surgery. She’ll probably have a day or two in transition to the neuro ward and then be discharged. Hopefully she can return to acute rehab by Easter weekend.  

We’re thankful for a new appreciation of our resources in the Lord. His peace and strength; his love, faithfulness, and powerful hope have been ours in full measure this week. At a hospital with 510 beds where perhaps 509 other people are enduring their own episodes of medical crisis, it’s amazing that God cares for each of them as much as us, while none of his attention or supply for us is diminished. And we’re just 510 people in a Los Angeles hospital out of 7 billion on the planet whom he loves perfectly as well. God is so huge. We’re thankful for how he cares for us.

Shunt procedure 2

It's been a difficult couple of days for Susan. Having two identical tubes located in the same area near her right clavicle caused the neurosurgery team to make a mistake yesterday. Thinking her recently-implanted VP shunt tube was routed to the right of her port catheter tube, they cut the wrong one when trying to extract the shunt. As a result, IV access through her port was literally cut off, causing the saline drip to infiltrate and swell the surrounding tissue. Meanwhile, the blocked shunt tube remained intact.

The good news is it apparently caused no other problems than disturbing the tissue and forcing a new sequence of procedures. Late last night they put in a temporary central line to supply needed IV access. New imaging shows the shunt tube crosses to the left of the catheter line and extends down along the center of her chest wall. This evening the neurosurgery team is extracting the shunt tube so Susan’s CSF can drain externally as intended. Next, the vascular surgeon who implanted her port catheter will remove it as well, perhaps tonight.

Once her brain hemorrhage and hydrocephalus properly stabilize, she’ll have a two-part surgery where the neurosurgery team will implant a new VP shunt, then the vascular surgery team will follow and implant a new port catheter. Such a deal.

Meanwhile, Susan had an MRI this morning for a detailed view of her brain bleed. I haven’t heard the radiologist’s report yet, but since she’s been mostly stable, I suspect the bleed has stabilized also. She’s definitely several notches below normal with spotty orientation and hit-or-miss responsiveness.

I had a surprising report from the neurosurgeon who tapped her shunt yesterday – she woke up before he even tapped it, which blows my mind. That means she went from deep, unresponsive sleep to being awake and alert regardless of having CSF drained to relieve pressure. That kind of sleep returned this afternoon, causing everyone to be concerned again about her status until she was able to be roused. Perhaps this week’s events have just made her neurologically unstable, hopefully just for now. We’ll know in time.

Being able to post updates on this blog and on Facebook has brought friends and family to respond in prayer and with encouraging comments. I want you all to know how deeply we appreciate your care and prayers. A hemorrhage of any kind sounds scary; but learning Susan had a brain hemorrhage rattled me – even for the second time. Such news is never welcome.

But the hope and peace God provides are real and steel-strong for us. I can’t explain Susan’s brain tumor or her many complications or her nearly six years of survival. I can’t explain how we haven’t crumbled under it but for God and his catalog of mercies for us. You’re part of it, both as a source of blessing to us and as witnesses of God’s grace in spite of heavy circumstances. We love and thank the Living God and we love and thank you. Thank you for keeping Susan in prayer.

Shunt procedure update

The procedure finished, so Susan's shunt is now draining externally. Her CSF from the brain is bright red instead of the usual yellow-gold due to the bleed.

She has quite a bit of swelling near the site. They thought at first it was fluid from her abdomen flowing upward through the part of the lower shunt they couldn't remove and had to cut, but the large amount of swelling didn't make sense.

Now they suspect the needle leading into her port catheter was dislodged during the procedure, causing saline going into the line to seep into the surrounding tissue. They'll shoot a quick x-ray to see if that's true. If so, they'll place a new needle and continue using her port. if not, it's more complicated. Either way, later tonight she'll have an MRI instead of a CT scan for a detailed look at the bleed.

Susan is awake and alert, and is the sweetest person in the whole world, I tell you. She's clever, too. Doctor, who Susan just called "honey": "How many fingers am I holding up?" Susan, who either has no idea how many or just can't get the word out: "That many."

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Shunt procedure

The neurosurgery team is doing a procedure to pull the lower part of her shunt near her clavicle so they can remove its blockage and it can drain blood and CSF externally. We pray for no complications. Her symptoms are still good. 

Our neuro-oncologist Dr Nghiemphu showed me this morning's CT scan and new pockets of blood in three areas: tumor cavity, ventricles, and left occipital brain.  The first two are not too worrisome since they're open spaces; but the brain area could have visual or cognitive effect. Time will tell.  

It's possible the hemorrhage actually caused the hydrocephalus if bleeding began, clotted in the shunt, and blocked the flow of fluid. So two separate complications may be cause and effect. 

Dr Nghiemphu forewarned me that whatever cognitive hit the bleed may have caused may take a long time to resolve or may not resolve at all. She said hemorrhages are troublesome; and we don't know how this latest insult to Susan's brain may have damaged it. So far she seems okay to me since she woke up. Let's pray for healing and restoration. 

"Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed." Psalm 57:1

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Quick help in ICU

I'm greatly encouraged that Susan is awake, alert, and even laughing here in ICU. The neuro team tapped her shunt and drained off about 10 cc's of CSF, enough to lift the pressure from hydrocephalus and bleeding. They'll test the fluid for infection also.

She's been swarmed for the past couple of hours here with top-notch nurses setting her up for treatment and observation. They've administered several things to enhance clotting against her brain hemorrhage - blood plasma, blood clotting factor 9, and vitamin K.

Her CT scan this morning was thankfully stable vs last night. She'll have another at about 6 pm. These ICU people are awesome.

Meanwhile, with the return of hydrocephalus, they'll evaluate her VP shunt after suspecting a blockage in the distal or lower portion. That may require another surgery; but it's too soon to know.

A hemorrhage and hydrocephalus are a lot to deal with at once; but we're relieved to have a positive turn at last. We're secure in the peace of God and grateful for so many prayers on our behalf. Thank you.

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Brain hemorrhage

We learned this morning that Susan has had a brain hemorrhage. She had a CT scan around midnight after arriving earlier at UCLA from acute rehab in Long Beach. The neurosurgery resident said they observed discreet areas of bleeding and have ordered a second CT scan to check its progress. She’ll have an MRI soon as well for greater detail and will be moved to ICU.

The priority is to stabilize her bleeding with a drug that counters the effect of Coumadin she had during her stay in rehab that was used to treat blood clots they discovered in both legs. Such a deal. Once she’s stable, they’ll decide next steps.

Yesterday afternoon I got concerned when she became discomforted and verbally unresponsive, though awake and mostly alert. Since about 2am, she’s been sleeping and mostly unresponsive.

Susan had a brain bleed a little over four years ago that brought her to ICU here with preparations for surgery, but the bleed resolved on its own. Please pray for another such outcome.  

Have mercy on me, my God, have mercy on me, for in you I take refuge.
I will take refuge in the shadow of your wings until the disaster has passed.

I cry out to God Most High, to God, who vindicates me.
He sends from heaven and saves me, rebuking those who hotly pursue me — God sends forth his love and his faithfulness. Psalm 57:1-3

Revisiting a slump

Although I was able to coax a few smiles from Susan yesterday, much of the day she didn't feel well and had several vomiting spells. Her cognitive and physical weakness persisted. She could offer only delayed responses and one-word answers.

Her neuro-oncologist confirmed she needs to see the neurosurgery team at UCLA as soon as reasonably possible to evaluate her shunt. With more vomiting today and no other improvement, the UCLA neurosurgery team agrees and wants her admitted to the hospital. Susan will be transferred once doctors finalize the details and a bed is available.

We're probably in for an ER-type experience except her room where we wait in Long Beach is larger and the ride to UCLA's 6th floor neuro unit is longer. Susan may be in for another multi-day stay to diagnose, treat, and observe, hopefully with a mere shunt adjustment.

From there the good therapists in Long Beach are eager for her to return and pick up acute rehab without anything working against her. The journey continues. We have peace.

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A mid-week slump

After a report of Susan vomiting on Tuesday afternoon during therapy got my attention, two more episodes on Wednesday gave me concern. Another neurological hit could mean a shunt failure, brain bleeding, or several other serious but less urgent problems. She was less talkative on Tuesday evening, needed maximum queuing during therapy, and had been staring at her food rather than feeding herself. These are not good signs. 

The attending physician in rehab ordered a brain CT scan Wednesday, which thankfully appeared to rule out our most serious concerns. But as Susan’s advocate, I wasn’t satisfied. While I didn’t doubt the LBMMC radiologist’s opinion of that scan, I knew it would be more meaningful when compared with the others recently done at UCLA. I requested a CD copy, picked it up Thursday morning, and delivered it to Dr. Nghiemphu at UCLA. She emailed me later to say there’s no remarkable difference between it and Susan’s prior scans, but she’d have the neurosurgeon view it as well. 

With good news confirmed, we still didn’t have anything actionable for Susan’s symptoms. Fortunately, she’s had no anti-nausea meds since Wednesday night and no vomiting either. She still seemed affected to me last night, but maybe she was just tired. Nurses reported a good day in therapy. We’re left without knowing anything conclusive about her mid-week slump other than it seems to be resolving, so that’s good. She may be experiencing a residual effect from having a tube implanted in her brain, or perhaps from last month’s chemo. Or both. I’ve had to become uneasily comfortable not having all the answers. 

The plan is for Susan to come home next weekend, perhaps even Friday. We’ll take a half-day jaunt on Wednesday to UCLA for chemotherapy. Hopefully, she’ll be able to make the best of her remaining therapy hours and come home well enough for us to care for her safely here. 

Susan’s absence reminds me of 2008 when she was in rehab for three months. I think I miss her more now after just a week than I did then, perhaps because now I wonder what our home would be like without her when she goes to heaven. This is not a hopeless thought, just a hard one. My consolation comes when I see her again at her bedside, kissing her forehead and saying I love her. Being able to do that is actually a great gift, as though I’ve lost her and have the miraculous opportunity to see her again. I expect this will comfort me on the day I need it. 

Meanwhile, the Living God never slumbers or sleeps and is constantly working out his good purposes for us. Susan drank in these words from Psalm 57 when I read them to her last night: 

“Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed. I cry out to God Most High, to God, who fulfills his purpose for me. He sends from heaven and saves me, rebuking those who hotly pursue me; God sends his love and his faithfulness.” 

Susan usually can’t tell you what day it is, but she received God’s word for her, looked me in the eyes, paused a few moments, and said, “That’s perfect.”

Therapy is a good thing

After a few days ramping up and being evaluated, Susan had her first full day of physical, occupational, and speech therapies today. She was in good spirits this evening as she ate dinner during my visit after work. I’m not sure if I ever met anyone with a better disposition, more easy-going, less grumbly, more hopeful, and more patient than Susan. She just goes with it. I’d have tried a jailbreak or two by now if it were me. Not her. She’s calm, sweet, and majorly strong. 

As I speak of her strength of character, I was amazed on Saturday how much physical strength she’d gained just in the couple of days since she arrived. As Michelle the physical therapist did her evaluation, she tested for strength, flexibility, and initiation of movement as she led Susan to lie down and get up from a bed and then take a few steps with a walker. The strength is returning to Susan's right arm, so she's able to lift it more and grip things slightly.

The therapist is recommending she stay in acute rehab for three weeks, so if insurance is on board for that long, she’ll come home greatly improved. Meanwhile, we visit each day and look forward to her coming home. I can’t deny I’m relieved myself during this respite from the routine and responsibility of caring for her at home, so I’ll use the time for some caregiver rehab. I keep thinking about Psalm 54:4, “Surely God is my help; the Lord is the one who sustains me.” He’s got it all worked out.

Rehab begins

After several days to recover from surgery, Susan transferred to the rehab unit at LBMMC yesterday evening. She feels okay and will begin her physical, occupational, and speech therapy evaluations this morning, which will indicate how long she may stay.

She's slated for three to six hours of therapy daily. We're thankful for good progress and answered prayer.

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Stable MRI, seizure control, and dermographia

We saw great results with Susan’s four-week MRI today – continued tumor stability and the evidence that her six cycles of Temodar were nicely effective. Dr Nghiemphu continues to be concerned that the onset of Susan’ seizures last month is the leading edge of more tumor growth, so we’ll be back for another scan in six weeks. Her October scan is our new baseline for comparison for growth – October shows slight regression vs last May, while today’s scan shows stability vs October.

Meanwhile, we updated the neuro-oncologist with Susan’s status on Keppra + Vimpat for seizure control. We haven't noticed any seizures since discharge from UCLA four weeks ago. Dr Nghiemphu figures Susan had been having sub-clinical seizures for some time before they became noticeable, which would account for her increased confusion over the many weeks leading up to the cycle that erupted last month. The news is good now though: tumor stability and seizure control.

Finally, we shared with Dr. Nghiemphu the results of Susan’s visit to an allergist last week. It was quite a process of discovery, and another view of the medical role of problem-solving. Dr Schoendorf is a veteran physician who quickly got to the point when walking into the room: “How can I help you today?” After I described how Susan’s skin had broken out within 30 hours of a chemotherapy dose last August and that it had persisted mildly pretty much every day even though chemo was suspended in October, I said we wanted to find out if she has some other drug allergy.

He said we might be frustrated to know there’s no blood test to check for drug allergies. He then pursued a routine of questions about changes in Susan’s diet, clothing, bedding, soaps, etc. There were none. When I described the rash and welts that develop, he pronounced that she has hives. Now we were getting somewhere. Then he said we might be frustrated to know that 95% of the time we don’t know what causes hives. When I mentioned she gets the hives near the collar of her nightgown, from the folds of the sheet under her back and so on, he had a hunch.

He pulled her sleeve up and gently scraped Susan’s forearm with his pencil eraser. Instead of having little reaction, it got “hot” as we talked, becoming reddened and more defined, leaving a perfect trace of the eraser on her skin. He pronounced that she has dermographia. It literally means “skin writing” and happens when cellular changes in the skin cause histamines to be released without the presence of natural antigens to counter them. He said the dermographia is what’s causing the hives. Now we were really getting somewhere.

Then he said we might be frustrated to know they don’t know what causes dermographia. I wondered whether Susan reached some toxicity level from chemo that triggered it initially. He said there’s no way to know that. The condition comes on spontaneously and can leave the same way. Or not. With the cause unresolved, we focused on treating the symptoms. I’d been giving her Benadryl (an antihistamine) each morning and evening; but he doesn’t like its short-term results and side effects like drowsiness. He recommended Allegra since it’s taken once daily and has fewer side effects. She’s had the Allegra for a week and no more hives, a good thing.

Susan’s allergist event was another border skirmish aside from the larger war of brain cancer, but has some similarities. We know it’s there, but we don’t know why. We can’t cure it, but we can try to allay the symptoms. Having already made peace with not knowing why, we’ll just get on with life such as it is in brain tumor world and dermo-graffiti land. We remain thankful to God for his goodness and faithfulness in all things.

Adrift in dreamland

Although I did not observe Susan having any seizures yesterday, the EEG recorded eight in a 10-hour period. The visible ones are potentially more dangerous to her body, so it’s good that the activity has been sub-clinical. She’s on Ativan round the clock to break the seizure cycles. It makes her sleep a lot – over four hours so far today.

I couldn’t imagine staying asleep while a nurse attached a cuff and took my blood pressure, but Susan did. She also slept through having her finger pricked for a glucose test, having the room cleaned, and having a neurologist view her EEG screen while conferring with me from three feet away. That’s enough to make a Buccowich proud – we who descend from a long line of semi-professional sleepers. 

All of this long winter napping has made for a quieter day since she hasn’t been roused enough for therapy. The Ativan effect is evidently quite contagious as sleep became my only activity for at least an hour. So vigorous was my sympathetic exercise that I need a little rest afterwards.

Susan has awakened at last and is in good spirits. She hasn't had any seizures that I noticed again today, so we'll see what the EEG reveals. There’s still no word on discharge. Thoughts of a jailbreak consume me. We're thankful for a world class health care facility with flat-screen TVs and for ESPN with college bowl games.

Seizures linger and so do we

This will be Susan’s fifth night in the hospital in what’s become an extended stay. The UCLA neurological team continues to monitor her seizure activity while trying to find the mix of meds that will be effective at home. Meanwhile, her seizures linger.

Following Sunday’s 20-minute study, she began a continuous EEG yesterday afternoon that recorded at least 12 seizures in about 18 hours, mostly during the night. I observed two before leaving at 10pm. The staff witnessed just two or three more, so evidently there’s a lot of seizure activity that’s sub-clinical, noticeable only in brainwaves. As a result, they’ve increased some anti-seizure drug doses and added another 24 hours to the EEG study. Since Susan made the EEG bonus round, the attending neurologist gave me one of his "No Seizures" buttons. Don't be jealous. Our first chance for discharge may be Friday – but I wouldn’t be surprised to be here another weekend.

We enjoyed visits on Christmas from family and friends bearing gifts. The poinsettia that caregiver Jackie brought adorns Susan’s window overlooking Westwood Blvd. Being together with loved ones lifted our spirits. This was the first time in our lives we celebrated our Savior’s birth apart from worship in church and festivities at home. In spite of some sadness at being so disconnected, being sequestered was good in a way. We were removed from the American intensity of Christmas and left with quiet reflection on Jesus birth. Even if we lose the holiday trimmings, God’s marvelous gift in Christ can never be diminished.

Today was Susan’s scheduled two-month MRI and neuro-oncology visit. Since I made sure her MRI on Saturday also followed the oncology protocol, she didn’t need the scan today. I think that nixed about $6k in medical billing. At 10:30 this morning I simply walked next door and chatted with Dr Nghiemphu about all the weekend test results while Susan slept.

She confirmed that Susan’s tumor is mostly stable. While this is good news, she’s concerned that seizure activity could indicate tumor growth that’s not yet visible by MRI. We know that GBM tends to advance with microscopic tendrils, so I share her concern. We went back to a four-week interval for Susan’s next MRI and will take it from there. This is no different than the past 5 ½ years with incurable, progressive brain cancer. She's made it this far. We hope for the best, pray always, trust God, and are ready for anything.

The rest of the day has been busy with visits from the usual staff plus occupational, physical, and speech therapists. At different times. Add the nutritional counselor, BP readings and blood glucose tests, and Susan’s pretty popular. She also graduated from bed and spent the afternoon in the recliner.

I’ve seen no seizures so far in over 8 hours; but she’s been on increased Vimpat and a double dose of Ativan this afternoon, which may be enough to ward off an LA earthquake. It certainly warded off wakefulness and ushered in a deep, quiet nap. I’ll spend my third night here tonight. We’re thankful for God's peace, everyone's prayers, great medical care, and loving family and friends.

Christmas with the Bruins

It’s Christmas Eve, so we’re on track for “Christmas with the Bruins.” Our friend Sheri picked up on that theme too. She's a UCLA fan. I told her this episode is sort of a 70’s style TV special but without the musical numbers, costumes, lavish sets, or celebrities. And it's at a hospital. Our friend Alecia said Jesus wears scrubs tonight.

This is our third hospital holiday, following 2007’s Independence Day brain surgery and Labor Day meningitis. I guess this Christmas seizure swarm means we’re working through the calendar.

We’re sad to be away from our kids this Christmas except for bedside visits after a 25-mile drive to Westwood. We usually have church together and a Romberg family celebration on Christmas Eve, followed by our morning gift exchange and a Buccowich family celebration on Christmas Day. We love our family time and we’re sad to miss it this year. We’re sad to have our traditions interrupted. We’re sad for all that’s happened to Susan and for the burden it is on our lives.

Whatever heartache we may feel in being disconnected from our family and in struggling with brain cancer, we’re thankful to God for the gift of Jesus. I understand them so little; but I’m amazed at the great things God accomplished to bring about the life and mission of Christ.

There’s a lyric in “Carol of the Moon and Stars,” from Bob Bennett’s brilliant “Christmastide” album. He writes, “Look up, see the chaos and precision of the Living God.” Wow. That’s a word for me. We’ve known so much chaos – illness and upheaval, loss and brokenness. But we also sense God’s precision – his purposes at work in our lives that are magnificent in scope and perfectly executed, just on time. We don’t know how it all works. We trust God who does.

We love his peace that helps us as we move under the chaos into the stream of his precision. It’s a big pile of hurt with a place of consolation underneath. It’s a jagged crust of despair hiding hope inside a warm, gooey center. It’s so like God to compel us to find him in his stillness while the world rages all around. It's just like he did when the King of Kings came to Earth in the unexpected perfection of a baby in the filth of a stable. Merry Christmas.

It's beginning to look a lot like an unusual Christmas

It’s Christmas Eve. We’ve been at UCLA Med Center since Saturday when Susan was admitted through ER for moderate seizures that increased in frequency, even with higher doses of her anti-seizure drug at home. Since seizures can be common with brain tumor patients, Keppra is prescribed to prevent them. Susan’s taken it daily since 2007 without event until now. In my prior blog post, I explain how this seizure swarm started.

Susan’s battery of tests over the past 48 hours included blood and urine for infection, MRI for tumor, EKG for heart, and EEG for brain activity. The MRI revealed no great changes such as increased tumor, swelling, or fluid.

Last night’s 20-minute EEG recorded two seizures. The first had the noticeable symptoms of Susan straining her head and eyes to the right while unresponsive. As usual, it lasted about a minute with no convulsions or loss of consciousness. The second was visible only on the spectrograph of brain waves. With that, the neurology team thought she might need a continuous EEG under observation in ICU to track the brain-wave-only events.

But today, the combination of Keppra and another drug called Vimpat seem to be working. Susan’s last noticeable seizure was around 6am. The plan now is to forego another EEG and see whether the meds are indeed effective over time. If so, she’ll go home with a new anti-seizure cocktail – and we’ll add seizures to her long list of brain tumor experiences.

Susan is more tired and confused than usual and has been a bit contrary, sometimes wanting to peel off her EKG wires or wanting to get out of bed and go somewhere. Mild rebellion doesn’t come naturally for a gracious soul like Susan. But such disorientation is the stuff of brain tumor world. Thankfully, that fog looks to be lifting. Most of the time, lucid moments and her upbeat attitude prevail.

It appears the medical team’s decision to test Keppra + Vimpat meds means we’ve turned the corner from the long discovery phase toward treatment and discharge, whenever that is. I hope to see her neuro-oncologist before we leave since we were scheduled for a two-month checkup this Wednesday anyway. We’ve already done the MRI. I expect the neuro-oncology visit will inform us with the big picture. 

For now, we wait. Why not? It’s still Advent today, a time of waiting. We thank God for his love and faithfulness in all things, and for his peace at Christmas time.

Seizure swarm

We're in ER at UCLA trying to get a handle on a seizure episode that started last night. I first noticed an odd non-response from Susan when a neighbor greeted us at Costco. At the time I chalked it up to aphasia since getting words out can be hard for her. But she was obviously seizing later when she had her head wrenched way to the right with eyes pushing right and was unresponsive when Adam was talking to her. It lasted 30-60 secs, then passed.

I thought some rest might help but called the doctor at 2am after a few more occurred. I gave her an extra Keppra tablet for seizure control and we upped her dose for the morning. Dr Kong said we would chat again then. Susan's been on anti-seizure meds for 5 1/2 years without any episodes except after initial brain tumor diagnosis.

Last night she had one every 60-90 mins, so it was not restful. We slept late. After more Keppra and breakfast, the seizure intervals shortened to 15-20 mins. The doctor said we should go to ER for other meds to stop the process.

After 8 hours, an MRI, and other tests in ER, we're waiting for Susan to be admitted to the hospital. She's still had about 8 or 9 seizures while on the stronger Ativan. She's able to see and hear as they occur, but can't speak until they're gone. She's moderately disoriented and very tired.

The initial MRI report shows no swelling or fluid changes compared to October but evidently some tumor growth, which is no surprise right now. She'll be admitted upstairs hopefully soon. She's also scheduled for an EEG to study her brain waves.
The doctors want to get the seizures under control and arrive at a firm idea for the cause. For now, both of these elude us. Actually, so does the hospital room.

Some highlights of the day: Susan joking around with Austin right after a seizure ended; Susan joking around with me whenever she could; Susan and I hugging and saying "I love you" a lot; and me saying "I'm a writer" when the admissions clerk asked for my occupation. We thank God for his gift of life and continue to trust him in all things. We thank you for your prayers.