Well, not only did Scott not come home as scheduled today, but as of 9:15 this evening, he’s had to be readmitted to the ICU for respiratory distress.

I came up to S.F. this morning, after being delayed here at home all day yesterday waiting for the hospital bed, oxygen set up, etc to arrive. He was beginning to have a little trouble breathing and needing more frequent suctioning, but some frequent respiratory therapy treatments seemed to help, and a chest x-ray showed no extra fluid in his lungs. The decision was made to keep him overnight, watch him, and discharge him in the morning. 

Since I was expecting him to come home, I didn’t come prepared to stay overnight  in the city, so around 6:30, since he seemed to be doing a little better, I headed for home. Hadn’t arrived at home for more than 10-15 minutes or so, and got a call saying he had gotten worse very quickly during the evening, and was being sent to the 13th floor Moffitt ICU. They didn’t feel I needed to turn around and return tonight, but I’m expecting a call from the ICU medical team sometime tonight with an update and a hopeful cause of the problem.

Please pray for a quick diagnosis and resolution of the respiratory problem, and for peace and comfort for Scott, as his road home just got who knows how much longer.

Thanks so much for all your prayers, love, support and encouragement.

In hope, Lynne for the Halversons

Just wanted to put out a quick update, as well as start trying to line up help for the many things necessary as Scott come home.

We’ve been told they expect him to be discharged to home on Tuesday, but knowing how many things still need to fall into place, it could be 24-48 hrs later. A few medical issues, as well as transportation and equipment issues have to be resolved and in place just to get him home.

This afternoon, three friends – Dale and Joanna Pollock, and Clarke Hall – all came over to help me move unnecessary furniture out and rearrange our bedroom so that all the big medical equipment being delivered tomorrow morning will now fit. Thank you, all 3 of you, for the much needed help!

A big need will be for help in maybe a couple of 2-4 hr chunks each day for people who can just be with Scott and take care of some basic comfort needs – no medical care, in order to ease up my burden to attend to the multitudes of other details that need attention. If you are able and willing to help with any of this, please call Cindy Ritchie at 430-1230 to leave your name and number, and she’ll get back to you about scheduling some times. We’ll start by only scheduling a few days at a time so we can evaluate how it’s going as we figure out what life at home is going to look like with Scott at home.

God has been answering so many prayers re: our finanial needs (and how!), but we’re still waiting to hear officially that the transition from the old to the new insurance has taken place and gone smoothly.

Please pray for wisdom in being able to have everything that will be needed in place before he leaves the hospital.

God bless you all, and thank you so much for the prayers, the encouragement, and so much help.

Lynne, for Scott, Daniel, and Becky

Hello to all our faithful friends and family who continue to support us spiritually, financially, emotionally, and practically in so many, many ways. Scott is making amazing progress after 2 weeks out of the ICU, and the case worker and medical staff are deep in the process of making all necessary preparations for him to be discharged to home soon – possibly within the next few days to a week if all details come together.

He’s been 2 days now without the feeding tube, and has been able to take in enough oral nutrition (with the help of high calorie and protein drinks) to keep the tube out. PT is working hard at increasing his mobility and endurance, and today he was able to sit up high in the neuro chair for over 2 hours – longest time up since before he went into the ICU. His room is up on the 14th floor of UCSF and at the end of the hall facing towards the Golden Gate Bridge and Park. We rolled him in the chair out to the wall-to-wall floor-to-ceiling picture window where he had an incredible view and ate lunch. No fainting or dizzyness – yay! So this is another huge step in getting him mobilized and upright.

There was some discussion of possibly closing up his trach before he went home to let him breathe through normal channels, but the ENT (Ear, Nose, and Throat) docs feel he is not yet able to handle the respiratory secretions adequately to prevent pneumonia from occuring. Evidently, respiratory sequellae and problems can occur for up to a year after a patient having pulmonary clots of the magnitude and seriousness that Scott had. Hopefully, as secretions do continue to decrease (which they definitely are), he’ll be able to have the trach closed at some time in the not too distant future.

Within a few days we’ll be getting several items of medical equipment delivered to our home, including a hospital bed, oxygen tanks, and much more. We’re hoping Scott will be ready for a reclining wheelchair before he leaves the hospital, because if he’s not, there will be no way to get him out of the bed and bedroom for a change of scenery. Please pray that he’ll be strong enough in time, otherwise it could be weeks at home before there’s enough documentation to justify ordering it (and insurance paying for it!).

Speaking of insurance, there are still a lot of things that need to fall into place in the right order and right timing in the transition between the old and the new insurances. We are trusting that God in His sovereign power will pull all things together at just the right time to provide for our needs, as He already has so many, many times through all of this.

Another prayer request would be for the whole issue of help for me at home with caring for Scott’s many needs – that it will all be figured out in the right timing. There are several possibilities being looked at, but no certainty or definite decisions available yet.

Enough for this blog note, but hopefully, if he has adequate energy and time, the next blog might even be written by Scott himself!

God bless you all, and our deepest gratitude to all of you.

Much love, from Lynne for the Halversons

It’s Thursday morning, April 9, and 17 years ago today, our daughter, Becky, was born at 7:30 in the morning. Happy Birthday, Becky!

Sorry to have taken so long to update the blog, but I’ve been so busy that I just haven’t had the chance. Scott has been out of the ICU now for 1 week as of today, and he is doing really well. Secretions in his lungs continue to be a problem (and will be for some time to come with the pulmonary clots), but the staff are doing an excellent job of giving him regular breathing treatments and suctioning. Thankfully there’s no sign of infection (pneumonia) so far, so hopefully we can keep him free of respiratory illness.

The other issue of the open area at his tailbone is resolving wonderfully. With the new bed, consistent nutrition, and regular bandage changes, it’s healing and closing in beautifully. At this point, he is probably able to take in somewhere around 30-50% of his needed nutrition by eating, and the rest has to be by tube feedings, mostly at night. The main problem is just that it takes so long and requires so much energy to carefully chew and swallow around his trach, that just getting through half of a meal easily can take 1-2 hours.

One of the biggest goals is for Scott to be strong enough so he can come home, and to that end, Physical Therapy is working with him daily. He has been horizontal for so long, that even just sitting upright would cause him to essentially faint and lose consciousness. We’ve been getting him accustomed to being upright by raising the head of his bed up more often for more time. Tuesday, he was actually able to sit up on the edge of the bed (dangling) for 2 1/2 minutes, (without passing out) and then Wednesday, he dangled for a whole 8 minutes! The Physical Therapist, who is pretty non-demonstrative, was practically skipping out of the room because she was so thrilled with what Scott was strong enough to do. She shares a love of bicycling with Scott, and her mental pictures of how this feat is equivalent to Scott climbing a long, steep hill on his bike, were really helpful for him to picture as it takes absolutely every ounce of strength and energy he can muster right now just to sit on the edge of the bed.

Please continue to pray for all the financial/insurance/MediCal issues that we’re attempting to resolve. Unfortunately, it takes up a lot of Scott’s and my time together and much of his available energy trying to get it figured out.

Scott has been part of a four-some group of friends that have known each other since Jr. Hi. school, and have kept in close touch in spite of being spread out all up and down the West Coast – from the Seattle area to down below the Los Angeles area. The other 3 guys all flew or drove in today to be with Scott for a couple of days, so he’s been really excitedly anticipating their visit. Thank you, to Dan, Clint, and Marty for being such great, loyal friends, and to Amy and Shelly for letting your husbands come.

Thank you for all the continued care, love, comfort, prayers, and support from so many who are continuing down this path with us. When Scott is ready to come home, we will need even more helping hands to give him the care he will need.

With much love, Lynne, Scott, Daniel, and Becky

Scott was finally able to be moved out of the ICU this morning about 10:30am. The ICU medical team had started discussing the possibility last Thursday or Friday, so I hoped and expected it to happen one of the days earlier this week while I could be there. But, of course, it happened today when I had to be at home to take care of several things. Still, God provided friends who could be with him during this transition when I couldn’t. Thank you so much to Bill Fernald and Rene Gabriel for being willing to give him some company and comfort today.

The big goal now is for him to gain upper extremity strength and increased torso balance so I can manage him with transfers, and then he can come home! As of dinner yesterday, he was able to eat soft/pureed real food, and he was doing well with his intake, as long as he ate slowly and well so as not to choke. He will still need tube feedings for a while, since he literally just doesn’t have the energy to spend the time it would take to slowly eat all the nutrition he needs. Nausea, as one of the side effects still ligering from the chemo, is still often a problem, too. We don’t know yet how long until he will be ready to come home, but I can pretty much guarantee I will need a lot of help when that time comes.

Becky and I will be heading back up to S.F. tomorrow morning. It will be a little easier for her to handle now that he is out of the ICU. All the machines, monitors, and tubings can be pretty scary and overwhelming for anyone, especially if it’s your dad in the middle of all the above.

I haven’t actually seen the open wound area at his tailbone for a few days now, but the nurses reassure me they feel it is healing in a little better now with his new bed.

Would continue to appreciate prayers for all the headaches, pressures, documentation, and paperwork that go along with all the application/approval processess for the new insurance and for MediCal. Phone calls and searching for necessary documents and information seem to take up the vast majority of my time when I am home. As you can imagine, life over the past almost year and a half has been a little less than organized for us, so it’s often a great victory when I can find something I’m looking for.

Thanks from both Scott and myself, as well as Daniel and Becky for all the continued prayers and practical support. We truly feel that if we had to go through something as difficult as this, God could not have put us in a better place with better help and support than right where we are. All of you have been the hands and feet of Jesus helping us survive in all the necessary practical needs as they have arisen. We could not ask for more of an outpouring of love than we have experienced so continually from all of you through all of this.

God bless you all,

Lynne, for the Halversons

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