Prayer needed

Scott here. Forgive me if spelling is a little weird – it is hard to type in a hospital bed.  How nice for me to feel well enough to get on the blog! As you know, we’ve been asking for protection for myhealth – which we desperately need. Well, today, my dear bride, who  has worked non-stop on my care since December, finally succumbed today to a head cold.  Please pray for her speedy recovery.

lynne is heartsick – as am I – as we can’t see each other until this is resolved.

A big thank you to all who responded to our financial need -  we are blown away by your generosity.  As I lie here in the hospital, I’m very content.  I know how deeply loved Lynne and I are by family and friends.  Your prayers of borne this out.  It is incredible that for the first time in nearly a year I can say I’m cancer free! Please join us in prayer that I can maintain my good health until they can do the stem cell transfer in about 4 to 5 weeks.   

Thoughts from Scott

‘And the wise man built his foundation on the rock”.   If there is a lesson I’ve learned in this process, it’s this: you cannnot make it through unless your foundation is solid: 1, with Christ, 2. wiith your personal relationships and 3. with taikng care of your body.

It’s really easy to think one can wait until then and have time in the word and prayer.  Reality is you’re so sick you can’t even do that. And so scripture memorization you’ve done in the past comes through.  Friendships past and present come through. And of course family comes through!! The latest for me was exercise of the past, which really came through and helped secure approval of the Bone marrow transplant.

Love you all so much!

Scott, Lynne, Daniel and Becky

Scott is doing better and better each day. He was actually able to bear weight on his legs today for the first time in nearly a month, and final lab results are defined as non-malignant for both his spinal fluid and lung tests.

I guess the biggest good news is that this evening, as I was on the phone with Scott, Dr. Kaplan, the Director of the Adult Lymphoma Program at UCSF, came in and stated that the definite plan was for Scott to be retested and rescanned in 3-4 weeks after leaving UCSF for the rehab facility. He’ll be getting intrathecal (into the spinal fluid) chemo each week, starting today, just to be sure. If he is still holding a remission, he will return to the UCSF Medical Center for the stem cell harvesting and then later the actual Bone Marrow Transplant (BMT).

This is a huge cause for celebration, as well as a huge need for prayer.

Celebration, because for the past week or so, all the Hem/Onc docs have been hedging their bets and saying the decision to go ahead with the plan was still uncertain, obviously depending on how Scott responded and the proof that he really was in remission.

Prayer, because every time Scott has finished a round of chemo or radiation therapy, the cancer returned elsewhere within 1-3 weeks, and with that track record, the docs will obviously be waiting to see if it happens again.  

God has granted Scott healing at this point, and He is capable of keeping Scott in remission in order to undergo the needed BMT. Please pray fervently for God’s mercy over the next few weeks.

Another need for prayer: right now each day is so busy for Scott that he barely has time to take in the much needed nutrition and get enough rest. Between Physical Therapy, Occupational Therapy, Dieticians, docs from at least 3-4 different disciplines, Social Workers, Rehab evaluations, and a few more, he’s pretty exhausted. When I get back up there tomorrow morning, I’ll be working with the Patient Care Coordinator to try to set up blocks of uninterrupted time for nutrition and rest.

Thank you to so many who have helped us financially, and especially for all the prayers and encouragement so lovingly given. God has truly blessed us so richly through all of you, and we are grateful.

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

I’ll include as much info in a quick update as I can. The final lab results for Scott’s spinal fluid came back still normal and benign – no sign of the Lymphoma cancer. Whether medicine or miracles, we don’t know, but none of the Hematology/Oncology docs expected such a clear result! In addition, he was evaluated by the head Physical Therapist yesterday for his leg muscle strength and mobility, and her words were, “I’m going to have you walking again, and soon!” So, needless to say, we’ve been very excited.

We’re still waiting for results of the bronchoscopy from last Friday. So far, nothing has grown or been cultured out as far as an infection. Sometimes organisms can take awhile to show up when cultured. The docs really believe it is an infection since it wouldn’t be logical for the cancer to be gone in his spinal fluid but show up somewhere else. If all goes well, he’s likely to be discharged early next week to the rehab hospital to continue working on his strength and mobility.

One area Scott is still struggling with is the withdrawals from the steroid meds he’s had to be on for almost 2 months. This appears as kind of a hyperactive mind, some agitation, circular logic, and irritability. This is all temporary, and treatable with the right meds, but I know he has called a few family members or work cohorts and not always made sense. So, our apologies, and please understand and forgive him, and time will resolve the issue.

Thanks to all for your many prayers, love, and support. This past weekend marks one year since the cancer pain first appeared. God has supported and sustained through so much, and we know He’ll continue down the rest of the road with us.

Much love, Scott, Lynne, Daniel, and Becky

Thank you all SO much for your prayers and support. We know many have been waiting anxiously for the results of the Lumbar Puncture. It was delayed until almost 8 pm last evening, but I was at least able to be with Scott when it took place and to see that his spinal fluid was clear and colorless. This was wonderful, but lab results were needed before anything could be known for sure. This morning, the Hem/Onc docs came in to say that the preliminary lab results showed his spinal fluid was NORMAL, but we’d need the final results tomorrow morning to be sure. Evidently, the preliminary and final results agree 95% of the time, but they need to be sure, first, before stating definitively. Thank you, Lord!

Unfortunately, a new mystery has arisen. Yesterday Scott had a chest CT scan which showed a 1” diameter nodule in his upper left lung, which was new in the past 2 weeks. The greatest likely-hood is that it is an infection since he is definitely at risk with his immune system so compromised with the chemo regimen. Of course, they do need to rule out the possibility of a new cancer location, but again, the Hem/Onc docs believe it would be unlikely for that to occur since the spinal fluid is normal, showing that the cancer is responsive to the chemo.  He will undergo a bronchoscopy sometime tomorrow in order to identify the nodule, and then his antibiotics will be adjusted accordingly.

More good news is that his white blood cell counts (WBC’s) are starting to return, which helps heal his raw mouth, so he is able to eat a little better now. We are working diligently on his PT exercises for his legs, and slowly his strength and mobility does seem to be returning.

Conrad – and how you can help

Hey = Scott here- yeah, that guy! Horrible, hard days of late thanks for your prayers for my family and I.

If you haven’t heard Conrad’s story, you need to hear it.  Conrad and I have been friends since grade school, but we had lost touch.  In May, Conrad was challenged to look for my name on the Internet – and found the blog.  It’s been an incredible reunion since then, most remarkably because not only has Conrad lost his parents to cancer – and he is an expert on the topic – but Conrad’s wife Kimberly is an Oncology Nurse Extraordinaire.

Conrad will be coordinating a schedule for the people who have offered to provide help in some way, whether being with me, or helping Lynne and the kids in some way during this time. The goal is ultimately to provide some rest and respite for Lynne so she can continue to have the strength and energy over this long haul to help me. Now that my immune system is coming back, this is more possible, as long as no one has been sick or exposed to anyone who has been ill. If you would like to help is some way, please contact Conrad at conradpodsada@msn.com .

I would so love to see people, but I need everyone to understand a visit may be brief, and I may need to sleep for part of the time. Conrad has also volunteered to coordinate visits, so if you’d like to visit, contact him also.

This afternoon, Scott will get another lumbar puncture (LP) to check for cancer cells in his spinal fluid. This test will determine whether the chemo was effective in killing the cancer, or if it is chemo-resistant. If it is chemo resistant, there is little else they can do long term to save his life. Please pray, whether by medicine, or by miracle, that his spinal fluid will be clear and the chemo has been effective. They expect to do the LP later this afternoon or early evening. If it is not clear, it will be obvious right away, but otherwise definitive results will be known hopefully by tomorrow. This test will essentially determine his survival.

Thank you all for standing with us in prayer and support.

Lynne

“Lord, if You will, You can heal him.”

It’s been a week and a half since I had time or energy to update the blog, but I’ll do my best tonight if I can.

Today is day 24 for Scott in the hospital, and day 18 of the high dose chemo cycle. The second week of this chemo cycle is pretty hellish, as expected, so Scott has gotten through the worst of it and is beginning the uphill climb. The goal of the chemo was to take Scott’s white cells (WBC’s) down to “0” for a week plus, and thus destroy the cancer cells. The red blood cells and platelets (for blood clotting) also get extremely low, and he’s been supported with 6 different transfusions of either packed red blood cells or platelets, as well as multiple antibiotics to prevent fungal, viral, and bacterial infections during this time of extreme vulnerability. The other side effect of the “0” WBC’s is that the entire digestive tract is inflamed – from a mouth burning with multiple raw, open areas, to nausea and vomiting, as well as severe abdominal cramping and uncontrollable diarrhea. Needless to say, he’s been unable to eat, has lost about 15 pounds, and is currently on total IV nutrition. Just this week, he’s finally beginning to be able to eat a few bites of soft foods, but everything still burns inside his mouth pretty badly. He’s also now had 4 days of injections of a medication to help boost his bone marrow’s WBC production. As far as how he’s recovering from the chemo, the docs say they’re pleased with his progress and is exactly where he should be in his recovery. They expect it to take another week and a half to two for him to recover his cell counts enough on his own to be ready for discharge.

During all this, his leg mobility has reached a plateau, and not improved much because he’s been so weak and sick. Now that he’s gaining a little strength back, he’s been able to work harder on his PT exercises these past 2 days. The problem is, the docs can’t tell yet whether the cancer has responded to the chemo or not. There is concern that they are not yet seeing more improvement in his leg mobility, which they were expecting if the cancer is responsive to the chemo. Tomorrow they plan on doing another lumbar puncture (LP) to see if there are still cancer cells in his spinal fluid or not, and to give him another dose of intrathecal chemo. A follow-up MRI will likely be scheduled within the next few days, also, to check for changes in the cancer’s presence.

Obviously, please pray that Scott would begin regaining his leg movement and strength, and that the chemo has been effective in killing the cancer. There’s definite concern that if this chemo isn’t effective, how many more “bullets” are left in the treatment “gun” that can be fired to kill the disease. Please pray for wisdom for the docs, that Scott would begin reproducing his white blood cells soon, so his systems could heal and some strength return.

I know that many friends have left emails and Face Book notices on our email address that have gone unanswered. I apologize, but Scott hasn’t had the strength for over a week to get on line, and I’ve just been trying to survive, going back and forth between home and S.F. 2-3 times a week.

Thanks, too, to so many friends and family who called or sent notes for my birthday, last week. Lord willing, Scott and I decided we will celebrate on my “half” birthday next year in April.

Thanks to all of you, over and over again, for all the wonderful and encouraging notes, comments, and prayers. It surely helps to not feel so alone when your world narrows down to a bed in a hospital room for weeks on end. God bless you all.

Love Scott, Lynne, Daniel and Becky

So much has happened since the last update, it’s hard to know where to start. On the following Saturday (Oct. 4), Scott’s left leg went limp and unresponsive, so essentially he was paralyzed pretty much from the hips down. That evening, the very concerned Hem/Onc docs called in off-duty Radiation Therapy staff to give Scott a one-time fraction of radiation to his lower spine and right hip where the majority of the cancer activity was, trying to stop the rapidly advancing symptoms of lower extremity paralysis.

After returning from the radiation treatment that evening, a new round of potentially more toxic chemo was started. Scott was pretty much moderately sedated around the clock because of the pain and to prevent nausea and vomiting. Since there was no change or improvement in the level of paralysis by Tuesday, he received another shot of radiation to the same location as before. We also learned that the cancer was visible all the way up to his neck vertebrae in the surrounding linings of his spinal cord, but they couldn’t afford to irradiate his entire spine since that would kill the bone marrow in his vertebrae which he will desperately need later for his bone marrow transplant to succeed.

Finally, on Wednesday, we started to see improvements in his ability to move his right leg, and then on Friday, improvements in his left leg mobility. He finished the chemo on Wednesday, and actually tolerated it quite well, so far. This chemo will (over the next few days) bring his white cell count and his platelets essentially down to “0”, and he will need blood transfusions from low red cell counts also. This will make him highly susceptible to any and all infections, as well as bleeding potential because of the low platelets. He will not be released from the hospital until his cell counts have returned close to normal – likely another 1 ½ -2 weeks, barring any infections.

The other thing is, he will need to go to a rehab facility when he is discharged, not home, since they don’t yet know how much movement he will regain in his legs. We keep seeing improvements every day in his strength and mobility, but there could be some permanent nerve damage, and only time can tell how much.

We are thankful for every day of life that God gives us together. We don’t know what the end will be of this fight, but we figure that Scott should have been dead four times over, so far, what with the initial tumors, and the most recent 3 recurrences in the past 4 months. So evidently, God is not finished yet with Scott, so we keep fighting on, one day at a time.

We ask, again, for your prayers – that Scott would regain full use of his legs, whether over short or long time, and that God would protect him from infection during this time when he is so vulnerable. Thank you to so many we know, and to so many we don’t know but hear of, who continue to lift up Scott to our Heavenly Father, for we know that He hears and acts on our behalf. Thanks to all of you who are in this fight with us as our prayer warriors. God bless you all.

Love, Scott, Lynne, Daniel and Becky

Thursday evening from Lynne

We know many have been waiting, hoping, praying, wondering what’s happening with Scott’s health. We have, too.

After an MRI and two CT scans on Monday, the ordered PET scan couldn’t get done until today, Thursday. During this time, the fatigue and muscle weakness we were told to expect during and after whole brain radiation changed in scope and degree, and Scott has been rapidly losing lower extremity muscle strength and the ability to move his legs, especially on the right side. The past two days, he has been unable to get up without help, and his legs cannot support him without collapsing in a standing position. Multiple teams of Neurology and Hematology/Oncology docs have been coming through – testing, prodding, questioning and talking; trying to find all the clues and puzzle pieces.

This evening, our Hem/Onc docs told us that the results from the PET scan revealed “hot spots” (where cells are rapidly dividing) in Scott’s lower spine and right upper hip bone. They need biopsy proof, so he’ll be getting a bone marrow biopsy tomorrow afternoon, as well as a more definitive stat MRI this evening. Obviously, they are very concerned about the location of likely cancer in or around Scott’s spine/central nervous system, so they have already started him this evening on high doses of a steroid, again, (Decadron) to decrease the swelling at his spine, and hopefully reverse the muscle weakness in his legs. Once more specific location and tissue proof comes in (likely before the end of tomorrow), they’ll be starting another round of chemo.

Friday morning

More results and info keep coming in – will try to update as succinctly as possible. Last night’s MRI showed a definite area of “encrustation” surrounding the base of the spine but not in the central nervous system (CNS), definitely indicating Burkitt’s Lymphoma activity. This morning the senior Neurology doc came in (before I arrived) to tell Scott that the MRI results were showing consistency with his muscular weakness symptoms, so finally, the puzzle pieces seem to be falling into place and are being decoded. He will still have the bone marrow biopsy this afternoon, but as soon as the Hem/Onc docs come in, we’ll find out what the chemo plan looks like, though we know it will definitely occur.

So how are we feeling about all this? Actually, we’re very relieved. If the symptoms had indicated another disease process, they would need to delay all consolidation preparations in order to treat whatever the problem was. So we’re thankful the pain symptoms enabled the diagnosis to be made early so they could confirm and treat the new cancer site, and then lead right into the actual consolidation process (to harvest Scott’s own stem cells for the bone marrow transplant). This means Scott will likely be here at the UCSF Medical Center for some time yet – possibly up to a month, though we don’t yet know exactly how long. We’re waiting to hear from the oncology docs today, then we’ll have a better idea of what to expect.

Thoughts from Scott

Scott here. Well, I got to be without Decadron (the steroid drug that severely affects my moods) for almost a week. I’m so glad I did because it gave to me a glimpse of “Real Scott”. That is: “Decadron Scott” worries that the moodiness is the new normal, worries that he’s fundamentally changed as a person (for the worse), and loses perspective. “Real Scott” understands that the moodiness is drug induced, that he’s fundamentally the same person, and retains a mature and positive perspective (for example, “getting it” that right now my job is to heal, and that I need to not castigate myself for not “performing” up to pre-cancer standards).

Anyway, getting to be Real Scott for a few days has really improved my mood and perspectives – in short, I feel so much better. I do of course have some concerns over the mystery illness but, between the many prayers going up on my behalf and the outstanding care UCSF offers, I have multiple reasons to be confident that this mystery will be solved.

Finances

We’ve been getting several questions of late about our finances so I thought I’d take a moment to update you on this area of the cancer battle.

We’ve come through a couple of amazing months – Christ’s miracle of loaves and fishes come to mind. That is: there is no way our income for the month should be adequate to handle our expense load, but, at the end of the month, somehow it is. Last month our total expenses were the lowest they’ve been (adjusted for inflation. Sorry – I’m an Accountant!) since pre- children. This makes no sense with all the trips we’ve had to make to UCSF, meals taken at the UCSF Cafeteria, etc. We have the sense of a “big hand” shielding us and watching over us, and it is extending to our finances.

But I think I can with near certainty say that this will change in October and December. Our health insurance carrier just cleared a bunch of older bills that carry substantial copays with them – I think the most recent big batch passed on over $3,000 in copays to us. And that’s before the major expenses at UCSF have been accounted for. Just this visit alone I think I’m up to $1,000 in new copays: $500 for MRI’s, $250 for entering through the ER (Doctor’s orders), and $250 for a CT scan. In each case, the procedures done (MRI, CT Scan) are providing critical new information in our current battle. All told, I’m guessing we have around $7,000 outstanding copay medical bills coming our way.

So: if you’re interested, I’ll remind you that our church has established a fund that helps us with our medical bills – which you can give to. You can find the relevant information if you follow the “Ways you can help” link (under “additional information”) on the right hand side of the blog. Please don’t give to this unless you feel called, and please do not give to this in place of your church or any other worthy cause you feel called to –OK? Also, please understand that, since your gift to the church goes to an individual, any gift you give will NOT be tax deductible.

I should add: we expect by December to receive $500 in aid from the Luekemia and Lymphoma Society. And I’m also going to meet with UCSF officials to ask if they would consider halving my copay responsibility. Please pray for these efforts. We will be pursuing whatever means available in this regard to lowering that $7,000 figure.

Thanks for considering this assistance during a challenging chapter in our life.

A final thought from Scott

You’ve read this far, you deserve to hear something funny!

At the end of the Monday Night Football game this week, I was reminded of the power of misinterpretation. The Steelers PA system was playing Three Dog Nights song “Joy to the World”. One line goes like this:

Joy to the fishes in the deep blue sea

Joy to you and me

Until I was about 25, I believed these lyrics to be

Joy to the fishes and the people who see

Joy to you and me

And I used to get kind of angry when I’d think about this. “Hey – everybody thinks this is such a great song. But what about the people who can’t see? They don’t get joy? Huh? This is really an evil song”.

I don’t recall the exact circumstances of finding out what the correct lyrics were, but I remember I felt pretty embarrassed once I knew! Pretty funny stuff, huh? Joy to the people who see

Thanks as always for your prayers, blog entries, phone calls, gas cards, letters and other kindnesses you continue to show us. You give me many reasons to fight for my life!

Gratefully,

Scott, Lynne, Daniel and Becky