Wonderful Progress

Scott’s had a great week of progress, a little fun, and wonderful news that he gets to go home next Wednesday, the day before Thanksgiving.

Becky and I went up to S.F. on Monday afternoon, and since St. Mary’s rehab center is just across the street from Golden Gate Park, we took Scott AWOL for a 30 min. wheelchair ride through the woods. It was a taste of heaven for him, since he’s been in a medical facility now for almost 8 weeks. We all liked it so much, we went AWOL again the next day on a different path, in spite of the fog – we just bundled him up in a blanket!

Then there’s the issue of hospital food – gets REALLY old after almost 2 months. So, what could be better than ordering out for Chinese food, delivered to his room! Can’t beat that for a little slice of normal!

After the weekly rehab team conference Tuesday afternoon, we were given the wonderful news that they would be aiming for Scott to be ready to go home by Wednesday the 26^th, the day before Thanksgiving. They all felt it was quite do-able, since he was making such good progress. The major hurdle that needed resolving was to get Scott up all the stairs in our house to reach the living area. We called our good friend from Scott’s men’s group at church, Mike Kaping, who just happens to be a contractor, to see if he had any ideas for ramps or something to help. Before we knew it, he had plans laid out to build a temporary ramp up to our back deck so Scott can just be wheeled all the way up until he’s ready to tackle the stairs. He and a small group of volunteers put in the pier supports this afternoon, and tomorrow expect to finish most of the construction. God has truly blessed us with so many wonderful friends. This journey would have been so much more difficult without the love, care, and practical help of so many, many people. There are no words adequate enough to express our thanks, love, and appreciation to all of you.

Treatment Plan

Scott is not walking yet, but all the doctors fully expect him to with time and lots of effort in Physical Therapy. PT at the rehab center has concentrated on strengthening his upper body first so he can be independent and can function at home as soon as possible. He will continue with outpatient PT here near home to continue regaining his muscle strength, and retrain his brain, nerves, and muscles to work together so he can learn to walk again.

Yesterday (Thursday), he had his second post-discharge-from-UCSF intrathecal chemo injection. All spinal fluid tests continue to be negative for any evidence of the cancer. (Thank you, God!) He’ll get his third IT injection next Wednesday afternoon after discharge from the rehab center, and then on Thursday, December 4, he’ll get his fourth IT chemo. He’ll also get a PET/CT scan that day to check and be sure the cancer is still in remission. At that point, the Hematology/Oncology team will need to make the decision whether to have Scott return to UCSF to undergo another round of the same chemo with the very nasty side-effects and proceed with the consolidation and stem cell-harvesting process soon (early to mid-December), or wait possibly until after Christmas in order for Scott to gain more strength and mobility.

If Scott can be up and around, maybe even walking by the time he goes back in to UCSF, it will greatly decrease his risk of potential infections that often accompany immobility, such as bed sore infections and pneumonia. The risks between waiting longer to increase strength and mobility, vs. keeping the cancer at bay will have to be weighed and a decision made by the doctors.

Prayer Requests

1. Praise for good enough progress that Scott gets to come home in time for Thanksgiving.
2. Praise that my sinus infection is long gone, and I’m able to be with Scott as much as I need to.
3. Praise for the ramp being constructed as a means of getting Scott easily in and out of our house.
4. Prayer for Scott’s good progress in strength and mobility to continue here at home, and that changes in PT personnel and locations do not cause a lapse in his abilities.
5. Prayer for continued remission of the cancer, as well as for wisdom for the doctors in weighing the risks, and making the right decisions.

This past year plus has been an amazing journey for us of yes, much pain, fear, and uncertainty, but it also has been so incredible to watch God at work providing for us and touching so many peoples’ lives in so very many ways. His provisions have come through His people, as well as His incredible timing in bringing about circumstances that only He could have put together. The journey isn’t over yet. There’s still a very long way to go with many unknowns, but there’s such a sense of being exactly in the place where God would have us to be, that He’s in control – no matter what may happen, and that His love and care are always surrounding us. Thank you, all, for the many prayers, the love, and the practical care you have given us. Again, there are no words adequate enough to express our gratitude.

Love Scott, Lynne, Daniel, and Becky

The Week in Review

It’s been a pretty grueling week for Scott. He has 3 hrs. of therapy each weekday, half OT and half PT, as well as abbreviated sessions on Saturday mornings. When he’s not getting therapy, he’s most often sleeping. This week I was able to be with him from Sunday afternoon until Thursday evening, and we learned together how to best do his transfers from bed to wheelchair and back again. Since I will be the main caregiver when he comes home, he and I need to practice often and have our signals and communication down very well together.

Therapy is especially focusing on strengthening, strengthening, and more strengthening so he can walk again, since he lost so much muscle mass before and during this last round of chemo. He has definitely made progress that I can see, but being so exhausted, he struggles to see where he has improved. All the medical and therapy staff definitely think his strength, mobility, and ability to walk will all come back, but it’s going to take more time than Scott had hoped, and a tremendous amount of exertion and effort.

On Thursday, he was transported the half mile back to the UCSF Outpatient Clinic for his weekly intrathecal chemo injection. It was so wonderful and encouraging for him to have all the medical and support staff we’ve come to know and trust make special efforts to come by and see him when they didn’t have to during the times we had to wait. The MD’s are very happy at how well his body has recovered from the necessary chemo onslaught as shown by all his blood lab work. All cell counts and chemical balances are back to normal. Also very exciting is that his spinal fluid has remained clear for the past four lumbar punctures (LPs) that he’s had. So far, the cancer remains gone. Thank You, God!

The best part was when the RN who is Scott’s coordinator for his bone marrow transplant came by and told us about the team conference held just that afternoon regarding the plan for Scott’s treatment. He said that even though a few were expressing doubts about Scott’s strength, endurance, and ability to get through the rigors of a transplant, the program’s director, Dr. Kaplan, expressed his confidence in Scott, saying that he would get through the grueling process with flying colors because he was a fighter and wouldn’t give up. That was a huge vote of confidence for Scott, coming from the program’s director!

The plan will be for Scott to come to the Clinic every week for the intrathecal chemo injection to make sure his spinal fluid stays clear, and then after Thanksgiving, they’ll begin the restaging process to make sure his heart and lungs are still in good condition, and that the cancer is still in remission. Most likely early to mid-December he’ll return to UCSF hospital for another month-long stay to start the consolidation and stem cell harvesting process. Whether he is able to come home before this occurs will all depend on if he is able to regain enough strength for me to be able to manage him and meet his needs here at home.

Prayer Requests

1. Pray especially for Scott’s mood and encouragement right now. The task of getting strong enough to walk again feels truly overwhelming, and it is difficult to see how far he has already come, when all he can see is how far he has left to go.
2. Please pray that his ability to access the internet there would become more dependable and consistent. Part of what is most discouraging to him now is that he has no ability to engage the world outside the hospital with his mind in reading, e-mail connections, and research. He feels like his prison walls are closing in, and he can’t get out.
3. Praise for healing from my sinus infection so I could be with Scott this past week.
4. Pray for Scott to be able to regain enough strength so that he’ll be could come home for at least a little while before he has to return to UCSF. The last time he was home was September 28^th, 7 weeks ago, and it would be a huge victory if he could just have the normalcy of being home, even if for a little while, before another month-long stay in the hospital.

SO many have sent notes, called, and e-mailed us to encourage and remind they are praying for us. We are so grateful! In the dark and difficult days, it helps so much to remember how many are supporting all of us in prayer before the heavenly throne. Bless you all.

Scott, Lynne, Daniel, and Becky

New Location, New Schedule

I drove back up to S.F. on Wednesday, and helped to pack up Scott’s belongings so he could move to the rehab facility – St. Mary’s Medical Center at 450 Stanyan St., S.F., room 436 on the 4^th floor.

The medical director, as well as the internal medicine hospitalist, came in not long after arrival, asked lots of questions to get a thorough history, and a physical assessment of Scott’s strength and abilities. He likened the rehab floor to more of a “camp” than a hospital, since there would be a definite schedule when various therapists – occupational, physical, and respiratory – would all be working with Scott. Well, of course calling it camp made it sound pretty familiar, so maybe it was a little easier to settle in.

Scott has his own room, which is quiet and dark at night for good, sound sleeping (yay!). He doesn’t have an IV, so almost no interruptions at night. From Monday to Friday, he’s scheduled with the OT (occupational therapist) from 9-10:30am, and then with the PT (physical therapist) from 1-2:30pm. Then on Saturday mornings, he has an abbreviated session with both, so the afternoon and all day Sunday he can rest and recuperate. As could be expected, he’s pretty worn out, but he’s gaining ground in his strength and movement abilities every day.

Unfortunately, I’ve had to be here at home since Wednesday evening after moving Scott, since the antibiotic I was on wasn’t working and I needed to get a more effective medication. As some of you who have talked with me on the phone know, I lost my voice for most of the past 3 days, but it’s finally coming back. Since the sinus infection is clearing up, I’ll probably head back up to S.F. tomorrow (Sunday). Scott’s been pretty lonely, but thankfully, there’s been a few family and friends who’ve been able to go visit him while I’ve had to be away getting over this illness.

Next Thursday, he’ll go back to the Hem/Onc clinic across the street from UCSF for his weekly intrathecal chemo injection, as well as checking his cell counts, etc. His PT said he is very close to being able to transfer to a wheelchair, so possibly, he may be able to go by our private car rather than having to call a wheelchair transportation van company to take him and pick him up at $65 per trip.

The rehab medical director said he didn’t know for sure whether the two weeks of inpatient rehab that the insurance company approved would be enough for Scott, but that he would certainly “go to bat” for Scott with the insurance for additional approved time if necessary. That was very comforting.

In 2-3 weeks, UCSF will start “restaging” Scott, with all the PET scans and MRI’s to check for and confirm he’s holding his remission. So hopefully, if all goes well, he might be back in the hospital sometime in early December to begin the consolidation and stem cell harvesting process.

Prayer Needs

1. Please continue to pray this sinus infection I have will clear up quickly.
2. Continue praying for Scott to be able to regain as much strength and mobility as he can just as soon as possible.
3. Most importantly, please pray for continued remission.

Again, thanks to so many of you who have loved, encouraged, supported, and helped us in so many, many ways. With all our love, Scott, Lynne, Daniel, and Becky.

P.S. – Scott doesn’t have any internet access at this point, so he won’t be able to respond to anything for a while. Hopefully, he’ll be getting access next week, but the facility is evidently in the process of setting up it’s facility-wide access, and is still figuring out how to make it work and be secure.

Quick Updates

1) Scott will definitely be transferred tomorrow (Wednesday) about noon to St. Mary’s Medical Center Rehab facility in San Francisco.

2) My head cold turned into a sinus infection.

Praises

1) Scott is definitely gaining strength each day with Physical Therapy. He actually had the strength to push up from a sitting to a standing position today, with help. At the new facility, they will work him 3 hours a day to regain all the mobility and strength he possibly can before returning to UCSF for the next step.

2) We are incredibly humbled by how God is providing financially for us through so many of His people.

Prayer Needs

1) I felt better over Sunday and Monday, but as of today (Tuesday) I very definitely have a sinus infection. I’ve been on antibiotics since Sunday evening, but still have to get rid of it. At the beginning of today, docs thought Scott might not move until Friday, so I left S.F. to come home this afternoon since I’m not supposed to be at the hospital if I’m sick. But, several things changed after I left, so I’ll need to leave early tomorrow morning to return and help Scott get moved, then return home tomorrow night to take care of a couple of necessary appointments on Thursday. Most likely I will then head back up on Friday. Please pray I’ll be able to get enough rest to get over this infection, and that Scott will stay healthy.

2) Please pray for a smooth transfer and transition for Scott to a new facility. We’re pretty familiar with UCSF by this time, and change can be hard when you’re not feeling your best.

3) The insurance company has okayed for Scott to be at the inpatient rehab facility for 1-2 weeks, and after that, he’ll be heading home. Please pray for rapid strengthening and remobilization so I’m able to handle his mobility needs at home.

4) Please continue to pray that he will hold his remission for the next 3-4 weeks until he returns for the whole consolidation/stem cell harvesting process. I’ll be bringing him back to the outpatient clinic every week for another intrathecal (spinal fluid) chemo injection. Also in 2-3 weeks, they’ll be getting repeat MRI’s and PET scans to confirm the remission. All of these procedures will be on an outpatient basis, which is exhausting when you’re not weak and struggling with mobility issues.

5) In spite of all the very good things happening, and the many answers to prayer, both Scott and I seem to be struggling with discouragement too often during the past week or two. I’m sure my being sick and not being able to be with him as much isn’t helping. It’s also hard to feel like this has already gone on for so long, and to know that it’s likely to go on for another 5 months if all goes well. Please pray for us to be able to focus on God’s many good things and answers to prayer, not the exhaustion, and the discouragement that comes with it.

We are so grateful to so many people for the myriad ways we’ve been blessed, encouraged, and loved. Thank you for hanging in there with us.