It’s Monday afternoon, March 30th, and Scott and I are hanging out in his ICU room. He’s tired, but reading a BusinessWeek magazine for something to do as another day goes by – at least we get to be together. He’s been listening to his “70′s” songs playlist on iTunes on his laptop, and several of the staff keep coming in to say how much they’re enjoying his various songs and music genres. Not their usual ICU patient!

He’s been having feeding tube problems again – not pulling it out, but it got kinked and out of position and had to be replaced. Fortunately, he’s been able to take clear liquids like beef or chicken broth, clear sodas, and juices, so he’s been able to do okay with some nutrition intake.

He’s been off the IV BP med (Dopamine) now for several days, and the oral med they’ve used to replace the IV med has actually been decreased also, so this is very good news. His body his taking back over the function of keeping his BP up adequately.

The open area at his tailbone is responding very well to the decreased pressure of his new bed, and as the pulmonary clots continue to slowly shrink, he’s having less respiratory secretions and generally breathing easier.

Thank you to friends Susan Schaaf and Marty Walker for taking the time to come visit and be with Scott yesterday while I had to spend a day at home catching up. It really helps keep his spirits up to have some occasional companionship and encouragement.

Saturday, one of the hematology/oncology docs came in to see Scott, and Scott raised the question about when the stem cell harvest would be. I realized at that point that even though he was awake and nodding when one of the other docs had announced that there could be no stem cell harvest or transplant a few weeks ago, he had no memory of it now. So I had to break the unpleasant news to him all over again why there couldn’t be any stem cell harvest or transplant. It was hard for him emotionally to process the news – that barring divine healing, there was no longer any long-term survival option medically. We talked about it for a bit, and there were some tears on both our parts. He asked if his family in Seattle and Daniel and Becky knew yet about this decision, and when I told him that yes, we had all had a couple of weeks to process the news, he seemed to feel a little easier. I think it helped him that everyone knew and had been praying already.

He was pretty quiet and thoughtful much of the rest of the day, but before I left, I felt like he had found some strength, and was ready to trust God and deal with whatever happened, and to still fight with all he had to be able to get home for as long as possible.

The ICU medical staff have been talking for a few days, now, that he’s so close to being ready to transfer to a step-down unit, but then something else happens, and it’s delayed another day. Please pray that all would come together so he could be stable enough and ready to get out of the ICU. This coming Wednesday will mark 7 weeks in ICU, and 9 weeks total in the hospital.

I know sometimes I feel like a broken record when I say thank you over and over again as this long pathway continues on and on. But we are so truly grateful for all the prayers, comfort, help, and encouragement so many continue to give untiringly. God bless you all.

With love,

Lynne for the Halversons

It’s late Thursday afternoon, March 26th, and after being home yesterday with Daniel and Becky, I came back up to UCSF this morning. Scott is down at radiology at the moment having his feeding tube advanced (again), since he accidently pulled it out last night (again). He’s doing well with a clear liquid diet, really enjoying the broths, juices, and sodas. It will still be some time before he’s able to take in enough nutrition to rebuild the strength he’s lost, so the feeding tube needs to stay down a while longer, unfortunately.

Well, I’m sure everyone is wondering how his PET scan from Tuesday came out. Dr. Lloyd Damon, Director of the Bone Marrow Transplant Dept., (the same one who called Scott the “miracle boy” in late January) came in today to say that according to what they can see on the PET, Scott is in “complete remission for now”. What this means is that there is no overt evidence of active disease (cancer) right now, but since this type lurks microscopically, it will come back at some point barring divine intervention and healing. So the good news is, Scott will have some time to work on regaining the strength he’s lost so that hopefully he will be able to come home at some point.

The hope and the goal is, at some point when he is ready, to move him from ICU to a step-down unit since he will need cardiac telemetry still for a while. He’s been on and off the Dopamine (to keep his BP up), and no one is quite sure why sometimes he needs it, and sometimes he doesn’t. His PT needs are huge, also, as well as continued concern about the open area on his tail bone. It had been healing well, but today it’s not looking as good; possibly from all the interruption of nutrition with tests, scans, and feeding tube problems. They’re hoping to change him to a combination water/air bed to increase the healing. Everything can only be taken a day at a time, and finding the balance between all his needs is truly challenging.

Some prayer requests would be:

1) The feeding tube will stay down so he can get as much nutrition as he needs.

2) He’ll be able to progress in what he can eat.

3) Increased healing for the open skin area on his tail bone.

4) Increased strength to eventually be able to do transfers so he can come home.

5) To be stable enough with cardiac and respiratory systems so he can go to step-down soon.

6) Smooth resolution of insurance issues – still waiting for word on where the process is.

God bless you all for sticking with us through all of this, with meeting practical as well as prayer needs.

Lynne, for the Halversons

It’s mid-afternoon, Tuesday the 24th, and Scott is down at his PET scan right now. It was supposed to be at 8:30 this morning, but as usually happens, he got bumped to the afternoon.

Last night and today have been busy for him already. He went down last evening around 9pm for his CT scans. He had trouble breathing, BP dropped, they called a code, but as soon as they gave him oxygen and help with hand-bagging his respirations, he immediately responded without needing epinephrine or chest compressions, thankfully!

He was down and back to get his feeding tube advanced before I even got here about mid-morning, and then he easily passed the second swallow test, so he’s graduated to ice chips and sips of water. YAY! And once he’s back from his PET, he gets to have some real food – soup! If he continues doing well with soft, real foods, they will probably be able to remove the feeding tube in a day or so.

So far, the CT’s from last night have not showed anything, but the PET scan will be the real indicator. PT is supposed to be in sometime today (we’ve been told) to reassess Scott for his strength and mobility. So, he’s pretty busy. Thankfully, they adjusted his sleep meds so he got a better sleep last night.

We won’t know the results of the PET until at least tomorrow, but he keeps making amazing strides. Thank you so much to all of you for your prayers, many of which have been, or are being, answered.

With much love and gratefulness,

Lynne, Scott, Daniel, and Becky

It’s late Monday afternoon, and since he didn’t sleep very well last night, Scott’s been sleeping much of the day. Overall, though, it’s been a really good day for him. The PET scan was bumped to tomorrow morning, but I just found out that before today is over, he will be getting CT scans of chest, abdomen, and pelvis, which they can then compare with the PET scan tomorrow.

He got a “swallow” test by a speech therapist today, which he passed with flying colors. They will wait and repeat the test tomorrow, and if he continues to do as well, he’ll be ready to try some soft food. YAY! He’s been telling me for at least 2 weeks now that he’s hungry for real food.

He’s been off the ventilator continuously since Friday morning, and has the speaking “button” in pretty much all the time now. We’re doing a lot of laughing because of his weak voice and my laryngitis voice. I often have to whisper in his ear for him to hear me over the roar of the oxygen blowing at his trach. I’ve been offered a speaking “button” by some of the staff, just in case it would help!

They’ve been able to turn the IV BP med (Dopamine) way down, but it’s still not quite off yet. Many improvements and answers to prayers. Some staff are saying that if he continues as well as he is doing, there’s a very good likelyhood he’ll get to be discharged from ICU to a step-down floor perhaps by the end of the week.

I feel like I both do and don’t want to know the results of the CT and PET scans. He’s been doing so well and progressing so unexpectedly rapidly that it would be hard to hear really negative results. But since they’ll obviously need to know the status of the cancer to plan for his discharge from ICU, as well as hopefully eventually home or to rehab, they will be very important indicators.

Please pray for the results that they would be helpful in his prognosis. I would of course LOVE to see everything come back NEGATIVE and clear, but more than that, just pray for us to keep trusting God’s love and provision for us no matter what the outcome.

Many thanks and many blessings on you all,

Lynne, Scott, Daniel, and Becky

Sorry to take so long to bring an update. I’ve been sick with a head cold which turned into another sinus infection and laryngitis. Fortunately, antibiotics can turn things around quickly, but I still don’t have my voice back yet. Thankfully, our friends Ted and Jane Hutchinson were able to stay and be with Scott for a few more days so I could rest and recuperate longer at home until I was no longer contagious. Thank you to Scott’s cousin, Ann Gunderson, for being willing to entertain and house strangers (T and J) without my being there to introduce them.

A quick update about Friday when Daniel and Becky came up with me: unfortunately, Scott was too sleepy to really be able to hold any kind of a conversation without him dozing off after a few words. Hopefully, with how much progress he’s making, they’ll be able to come up again soon and we’ll try again.

Scott was off the ventilator and just on humidified oxygen for all day Thursday and Friday, just going back on at night. Right now he’s been off for 2 days and nights, and even though it’s wearing, he’s been able to hold his own. He still has a fair amount of fluid in his lungs because of the clots, but his cough is stronger, and he’s pretty much having the speaking “button” in all day. It is SO nice to be able to talk with him. Unfortunately, my laryngitis isn’t helping anything – we’re quite the pair trying to talk with each other.

He is still on the IV med (Dopamine) to keep his BP up, but they’re trying to taper that off as they slowly increase an oral med for his BP. He’ll need to be off the IV med to leave the ICU. Speaking of leaving the ICU, maybe this week, if all balances out and remains stable. Tomorrow, Monday, he’s scheduled for a PET scan to check the status of the cancer, as well as another trip down to radiology to advance the feeding tube again since he pulled the other one out accidentally the day after his first trip to radiology.

Scott is having some confusion, especially in the early morning hours, but after being in an ICU for 5 1/2 weeks, a little ICU psychosis is hardly surprising. He’s doing the hard work of breathing on his own, as well as using a squeeze ball to exercise his hands to regain strength and coordination. He is weak, but he just keeps coming back. The docs feel he is doing better right now than they thought he would, so that’s encouraging. Right now (Sunday afternoon), he’s off and on dozing, but in between he’s watching a little March Madness on tv.

Thanks to SO many of you for your visits, notes of encouragement, and many prayers.

God bless you all, Lynne for the Halversons

It’s Thursday afternoon, and I am here at home with the kids because I’m fighting a cold. Woke up yesterday morning feeling awful – achy, sore throat, congested, and coughing. Really didn’t want to give something like this to Scott – would turn into pneumonia and he wouldn’t survive it in his current state of weakness.

God works things out so well. Our friends Ted and Jane were just about to head back up to Seattle from our place yesterday morning, but something spilled in the car, so they came back in to get clean-up materials. I just happened to call Daniel while they were in the house. Once they figured out I was ill, they dropped their plans to head home and headed straight up to UCSF to be with Scott so I could come home to recuperate. Thank you, Lord, for knowing the needs and providing the ways.

Some encouraging news on Scott’s condition – he was off the ventilator support and only on humidified oxygen, breathing on his own, for over 12 hours yesterday. He’s doing the very hard work of relearning to breathe for himself, especially with fluid still backing up in his lungs because of the clots. As could be expected, he was exhausted, and slept pretty much all yesterday evening and last night. He’s still pretty dependent on the BP medication to keep him stable. They keep trying him off it, and he doesn’t do well – agitated from low oxygen and very uncomfortable. He will need to be off it before he can leave the ICU.

Another piece of good news is that with the tube feedings he’s been getting for nutrition, he often has too much residual fluid left in his stomach (they check and withdraw every 4 hrs), so they have to turn the feedings off until enough has gone through his digestive system. There’s a high risk of his throwing up and aspirating stomach contents into his lungs if there’s too much fluid build-up in his stomach. Since Monday they’ve been trying to get him down to radiology where they will quickly advance (under fluoroscopy) the feeding tube he has in place to a position beyond his stomach and into his small intestine so he’ll get better absorption of the nutrition he so desperately needs. He kept getting bumped because of emergencies for 3 days, so they finally put him on the schedule today, and sometime around 4pm he’s due to have it done. A quick, easy procedure – just needed to be done in radiology to assure proper position.

Just got a quick text from Ted and Jane saying that he’s been down and back and the procedure’s finished. He also was able to sit up at the bedside for about half a minute today with help from PT. I also believe he’s been off the ventilator again for most of today. All are good signs of progressing.

One symptom that concerns me is that just yesterday, I asked him if he was having any tingling or numbness in his fingers or hands, and he nodded yes. There’s a potential that part of that could be from how much muscle mass and strength he’s lost through all of this, but of course, the greater concern is that it likely may be the cancer continuing it’s progression up his central nervous system.

I realized something a couple of mornings ago. I realized that any time I might wake up during the night, and always when I wake up in the morning, I reach first for my cell phone to see if I accidentally slept through any calls from the hospital. My fear would be, after all the emergency events that Scott has had, that I would miss a call saying he coded, they couldn’t revive him, and he would be gone before I could say good-bye. I certainly do believe that God is more than big enough to heal Scott if He so chooses, but I know many more people who regret that they didn’t say good-bye to a loved one in time, than those who said good-bye too early. We don’t know how much more time Scott may or may not have, and I’d rather say good-bye now and have 30 more years with him knowing how much I love him, than wait too long when he’s maybe in a coma and I won’t know whether he can hear me or not.

To that end, the kids and I are going up to UCSF tomorrow morning, and I’ve asked Daniel and Becky to think about what they would want to say to their dad. I’ve written down what I want to be sure he knows, in large font for ease of his reading and energy level, and I encouraged D and B to do so also if that’s helpful.

Would really appreciate your prayers that we could carve out some uninterrupted family time in the midst of the ICU’s noise and busy schedule for Scott. Would also appreciate prayers for Scott’s continuing progress with getting off the vent so he’ll be able to talk again. Also, once he’s off the vent, he can leave the ICU, and they can start getting some of the scans they need to know the status of the cancer.

With many thanks, and very much love, Lynne for the Halversons

P.S. Wow! Jane just called and put Scott on the phone, and since he has a button in the trach, he could actually talk in brief words to me over the phone! Fabulous!

Not a whole lot to report for today. Scott has been tired and sleepy much of the day, but when he was awake, he was alert, and very fully aware and cognizant. It’s so nice to see his bright blue eyes open and a little smile often as we attempted to converse – sometimes successfully, sometimes not.

The main goal for today was to slowly decrease his ventilator parameters, and decrease the IV drip (dopamine) keeping his blood pressure high enough. Both were accomplished within acceptable ranges though not ended entirely, so little by little, his own systems are taking back over. Possibly tomorrow, they may try him off the vent for a little while with just humidified oxygen. He still has a fair amount of fluid in his lungs (not infected, so not pneumonia) because of the 2 large clots in his pulmonary arteries, so that will remain a challenge for a while still.

Health insurance issues are in process, but nothing definite known so far.

Scott sends his love, and we both send our thanks to all of you for so much help and encouragement during this time. God bless you all.

Lynne, for the Halversons

Late afternoon, Monday the 16th. Had gone home Saturday evening as Scott was generally pretty stable. My 2 sisters, Irene Nelson, and Kerry Geist, had come down from Grass Valley and Sacramento, respectively, and kidnapped me to go to lunch at the Cliff House on Saturday. Thank you to brother-in-law, Steve, for treating us! Also our friends from near Seattle, Ted and Jane Hutchinson (who were planning on coming down next Saturday) packed up and drove down unexpectedly to arrive last Saturday, so they’ve been at home with me and the kids all day yesterday.

I got back up here this morning, and we waited all day to hear from the OR that they were ready for him so his permanent pacemaker could be inserted. They called about 3pm and his nurse had all tubes, wires, and cables disconnected from the bedside equipment, and reconnected to all the portable machines by 3:30. Then OR called and said he was canceled, so she reversed the whole process, had just finished, when OR called again a little before 4pm and said he was on again and wanted him now. I felt so bad for her repeated work load, but she handled it all with patience and aplomb, and I was very grateful for her wonderful attitude. So he left right after 4pm, and the anesthesiologist said it would be a good 2 1/2 – 3 hours before he’d be back in his room.

Scott has been sleepy off and on today, but when he is awake, he’s definitely all there, alert and oriented. I am now some of the time able to tell what he’s trying to communicate, but he still gets frustrated when I can’t catch it, and he wears out from trying. One of the things I’m concerned about is that even once the permanent pacemaker is in, working, and fine, another symptom of the vagal nerve being affected is that he wouldn’t be able to keep his blood pressure up (because the vagal nerve also controls vascular tone and constriction). Over the weekend, he’s had to be on gradually more and more IV medication (Dopamine) to keep his BP in acceptable ranges. There’s a hopeful likelyhood of the BP stabilizing out once the permanent pacer is in, but that remains to be seen.

Another concern and prayer request involves Scott’s health insurance. I got a call late Friday afternoon from a hospital financial advisor explaining that Scott’s $2,000,000 life-time limit was almost gone (especially at $20,000/day in the ICU!). She suggested a few things, one being to apply for MediCal health insurance, if we qualified. I would need to do so in our home county of Santa Cruz, but it was too late to do anything about it on Friday. So this morning, before I left, I spent a frustrating 1/2 hour working my way through their phone tree and on hold 3 times since the call got dropped twice. The best they could do was send a packet in the mail, but I would still need to apply in person in Santa Cruz with all necessary legal and financial documents and information.

Since there would likely be a lengthy gap between the end of Scott’s insurance limit and the onset of MediCal, I called Mount Hermon’s wonderful insurance broker, David Angel, to see if he had any suggestions or counsel. He has been able to set us up with an interim (though expensive) health insurance option to begin right at the end of Scott’s limit of coverage. Much of today has been a little hectic with e-mailed application forms, which the financial office here at UCSF printed off for me to fill out, then faxed back so all could be expedited as soon as possible. Thank you so much, David and Alden for all your help and expertise!

Sorry for the lengthy blog note this afternoon. I didn’t think there was enough to give an update over the weekend, but I guess it sort of all happened today. Well, it’s just shy of 6pm, and just got a call from one of the cardiologists that Scott’s almost done, all went well, and he’ll be back in his room in an hour or so after a stop in the recovery room.

Would appreciate prayers for good stabilization of his heart rate and BP with the pacer, and also that all the insurance issues will be resolved quickly.

Scott sends his love and thanks for all the visits and encouragement from so many people. Bless you, Paul and Laura Sampson, for going back up yesterday to sing and play guitar for Scott, after already having come up once the day before. Thank you to all who are being the hands and feet of Jesus to us and our kids right now. We are SO grateful.

Lynne, for Scott, Daniel, and Becky

Friday evening, March 13, and Scott’s really had a pretty good day. He was the most awake and comfortable that I’ve seen him for at least over a week, maybe more. Amazing how when your heart is working correctly, you can feel so much better! I’d say he was “talkative”, but it would be more accurate to say he mouthed a lot of words and I talked a lot. I’m really only so-so at lip reading, but I think little by little I’m getting better with practice.

We, the ICU docs, and the cardiac docs all waited all morning and much of the aftenoon for the hematology/oncology docs to arrive so we could all hear what their plans were for any scans, etc., to check the status of the cancer. Finally heard about mid-afternoon.

The plan is to go ahead and put in a permanent cardiac pacemaker, probably on Monday, or Tuesday at the latest to secure Scott’s cardiac safety and health. The next goal is to continue improving his respiratory status to get him off the ventilator, breathing on his own with oxygen, and then be able to get him discharged from the ICU. With the permanent pacemaker, he will never again be able to get an MRI of any kind, but they feel that they can learn from CT scans and a PET scan what they’ll want to know re: the status of the cancer. They don’t feel any urgency in getting these scans done. They can wait until he is out of the ICU and then check.

The long-term survival option of the stem cell transplant is no longer an option what with the cardiac and respiratory complications he’s had. The attending doc stated that they’ve had patients live 3, 6, and sometimes 9 months after the chemo regimen Scott has had. I pushed him and asked if that was valid even with the Burkitt’s Lymphoma which is so aggressive, and he answered affirmatively. His goal is to hopefully get Scott home to be able to spend as much time as possible with his loved ones.

I guess this pretty much confirms what we’ve been fearing and expecting to hear – that they are not really concerned about getting the scans to check the status of the cancer since it will take whatever course it will take in whatever time frame it chooses, and they have no additional treatments to stop its advance. The doctor actually did acknowledge that there could be a miracle and it would not recur, but besides that happening, the message was clear that it will be a matter of time before Scott does go Home to be with his Lord.

I’m afraid I have very little of anything deep or profound to say this evening, other than just reporting the events of the day, as we are trying to mentally and emotionally just process the reality of this final decision that there’s no additonal possible treatment.

My prayer is just that somehow through all of this, that God would glorify His Name, even if we may never understand how that’s happening. Thank you so much to Susan Schaaf (Anastasia) for spending some time with us today, and to Paul and Laura Sampson for a surprise, encouraging visit. Thank you, also, Alden and Lorna for time, encouragement, and a visit yesterday.

God bless you all for all your many prayers for God’s peace, presence and encouragement. As long as there is life, there is hope, so we will continue walking this path in faith and trust for as long as we must. 

Lynne, for Scott, Daniel and Becky

Early afternoon, Thursday. By the time they figured out what needed to be done, yesterday, it was too late to get either MRI or pace maker accomplished. So it was scheduled for 10 this morning to get the MRI done first with anesthesia support, then right after go to the cardiac cath lab and insert the pacemaker with same anesthesia staff.

I called in about 9 this morning to find that he had been bumped up because of need and taken down about 8:30 for the MRI. Arrived about 10:30 to find him in his ICU room – he went into asystole again while preparing him for the MRI, and needed meds and chest compressions to revive him.

Right now they are in process of inserting the pacemaker in his room since he is so unstable. This will mean they can’t do the MRI because of the metal associated with the pacemaker, so they will have to rely on getting some CT scans done to check the status of the cancer. But basically, all the hematology/oncology docs are expecting to see that the cancer was not arrested by or sensitive to the chemo this time around, and it is working its way up his central nervous system. His heart is healthy, but it’s the ennervation to his heart that is affected right now. This means that the pacemaker may stabilize his cardiac status for a while, but it remains unknown how long it will be until additional CNS areas are affected, such as the basic brain stem functions.

Truly, short of God’s intervention, I don’t believe, as a nurse, that he has much time left on this earth. I guess no matter how many times I may have thought or feared that, it still doesn’t seem real that I’m actually having to write that statement. I know and understand and can converse with all the medical and nursing staff about everything that’s happening, but it’s not just another patient. It’s my beloved best friend and husband, my life partner, whose physical body is more and more ravaged by the cancer, that is the patient.

Please pray for Daniel and Becky as this all unfolds. Please pray for Scott that God might will it to step in and give healing, but also pray for me that when and if the time comes, that I will be able to say as Job said, “The Lord has given, and the Lord has taken away. Blessed be the Name of the Lord.”

Lynne, for the Halversons