Radiation therapy begins this week

On Wednesday, Dec. 17th, Roger and I met with Dr. Pinover and the radiation team. They "tattooed" Roger with marks on his trunk which will guide them in their precision radiation. On Monday, Tuesday and Wednesday this coming week he will be receiving the radiation and we hope his severe back pain will soon be relieved. They will be targeting the tumor on his lumbar spine as well as several lesions on his sacrum that showed up on that second set of MRIs taken 1 1/2 weeks ago. This treatment is extremely delicate and potentially dangerous to Roger's spine and spinal cord. We continue to ask for your prayers for the Lord's protection against the harmful side effects and that He would enable the radiation to indeed fully zap the tumor and lesions. After Christmas the radiation will continue; we don't know the schedule just yet.
We are in the midst of all of the craziness that this time of year brings, preparing to celebrate Christmas with five of our seven children and their families. Two groups are traveling in from out of state: Andrew and Erin arrived from Chicago yesterday and Katherine and Rusty and their two children will travel from Virginia on Christmas day. Our children have been wonderful encouragers, supporters and prayer partners through the years of Roger's myeloma; it is a precious gift to be able to celebrate another Christmas surrounded by our large family, whether we are physically together or not.
This week we all lost a family member with has been with us for 18 1/2 years: our ancient little cat Shadow (known affectionately as Foop). This has been hardest for Roger, Cara and me, since we are the three who have been closest to her in recent years. Her going reminds us once again of the brevity of life and the ache of losing a loved one (and it's amazing how much you can love one of the furry variety).
It again brings us to remember that this life is but a brief prelude to the next, everlasting one. So thank the Lord for the joy of Christmas--the Hope of redemption from this fallen world through our dear Saviour, Jesus Christ. Roger and I and our family cling more tightly each year to the promise of our eternal home with the God who loves us and will take us to be with Him forever. (And I, along with Roger and C.S. Lewis--good company--are convinced that the Lord will spread His arms to include our animal friends there as well.)
Thank you for your prayers for Roger this coming week.
We pray for you for a Christmas full of joy.

A full week

Well, it's Saturday and we have just finished a full week. Every day but Monday saw us at some type of medical appointment. After seeing Dr. Pinover on Tuesday, we drove down to HUP for our appointment with Dr. Stadtmauer. He confirmed that Roger would have to begin a different chemo regimen since the other has stopped working. He also began him on another four-day course of steroids for an immediate shrinking of the tumor (and lessening of pain), but that is a stop-gap until the radiation treatment will begin. The presence of tumors shows that the cancer is not contained; the protein level reading--which should be available early next week--will tell us how much the cancer has advanced from its low point while the chemo was working. If the number is at an "acceptable" level, and everything appears stable for the next six weeks, Dr. Stadtmauer will see us in January to begin the new chemo treatment.
On Thursday night an MRI was taken of Roger's sacrum, which Dr. Pinover will review for tumors before he begins the radiation. On Friday Roger's orthopedist checked out his shoulder (where he has had pain for several months), and declared that the PT regimen he's following seems to be doing some good. Our next doctor's appointment is with Dr. Pinover on Wednesday, when Roger will get a CT scan and be prepped for the two-week course of radiation, which we hope will begin in the next couple of days.
So it has been a full week, a bit tiring for us, but full of reminders from the Lord of His closeness and His loving care. We enjoyed a wonderful pastoral visit on Thursday by Terry Traylor and Marc Davis from New Life Glenside; the messages we have received from you via e-mail, cards and phone calls have truly encouraged us. Thank you so much for your love and prayers.
We do ask for prayer that the radiation would totally eradicate ALL vestiges of the tumor and that it would not injure the spinal cord, which could result in very serious complications, including paralysis. It is an extremely delicate procedure, especially since Roger has been radiated in this area before. We even dare to ask for prayer that the cancer would not progress quickly and Roger could have several months off the chemo (even full remission)! God tells us to pray big prayers. But we know that God's will is perfect even when we do not understand it, so our prayer is always that we will fully receive all that He gives us with trusting hearts.
May the Lord bless you all this week of the Advent season as we meditate on the coming of our Saviour.

Meeting with the radiologist

Today we had our long-awaited appointment with Dr. Pinover, our radiologist. As he examined Roger, the location of Roger's pain had him a bit puzzled: it was lower than he would have expected from the location of the tumors on the MRI. So before he initiates any radiation, he wants to have an MRI done of the sacrum, (the lowest part of the backbone) to make sure that there are no tumors there which might be causing this pain. This of course delays the start of any radiation, so it's a bit discouraging, but we really appreciate the fact that this underscores Dr. Pinover's measured thoroughness. The good news is that he fit in a CT simulation for Wednesday (17th), which is the workup ncessary for the radiation.
Tomorrow we wend our way down to HUP to see Dr. Stadtmauer, and discuss with him all of the happenings since our last visit in October--and there have been plenty. The blood tests taken will show if Roger's protein levels have changed, as sure sign that the cancer is progressing, but we will not get those results immediately. The question on our minds is just what Dr. Stadtmauer will decide to do about the chemo regimen Roger has been on since June.
Please pray for much wisdom for him, for faith and trust for us, and for Roger right now, who is experiencing more pain and will probably have to go onto the steroids again tomorrow morning.
Thank you, Jesus, that you are with us through every changed schedule and bend in the road.

Pursuing radiation

Last Thursday the family celebrated a large (27 people) and meaningful Thanksgiving Day. We are so thankful to God for our family and for His leading and care for us all, as He guides us through this maze that is the cancer experience.
Through fits and starts, on Monday we were able to get Roger's MRI's to Dr. Pinover at Abington Hospital for him to review in order to see if radiation is possible on the tumors on Roger's backbone. Dr. Pinover is the oncologic radiologist who radiated Roger's tumors in 2004, so he is the one who can tell if he has radiated these exact spots before. Standard protocol is that if the spot has received radiation,already, that's it; too much incurs damage to the structure you're trying to save/protect.
Dr. Pinover was finally able to do his review yesterday (Wednesday), and called us from his home last night to give us his analysis. One of the tumors IS in the same spot as before. Not good. However, he said that he feels he can figure out a way to do the radiation anyway. Good! Because myeloma tumors require less actual radiation to treat them--they are filled with blood and are not the "solid" tumors of other cancers--he believes that the amount he used the first time and the amount he will use this time will allow him to go ahead with the procedure. Thank the Lord!!! This is a direct answer to all of our prayers.
We do have another hurdle, which we ask you to pray for. Dr. Pinover said that the radiation schedule is so filled up that his scheduling secretary is sure to put Roger in for January. This is just too long to wait, which he acknowledged. I spoke with the secretary this morning and she said she would speak with the doctor about what to do and when. Please pray that all of the preliminary procedures and the actual radiation can be done in December.
Roger is again experiencing pain from the tumors, which began this time right after the second round of steroids finished, so we know the cancer is becoming more aggressive. He is also quite weak and easily fatigued. This is discouraging. But I must say that when we get to a place where we are beyond our own strength, the Lord provides a Bible passage, a phone call or card, a visit, or just the direct prompting of His Holy Spirit to encourage us and remind us of His love and care--and that whatever happens, He has it all under His control. Thank you for praying with us and for us. Your prayers continue to be deep and real blessings through which God is working in our lives.
May you have a blessed week as you prepare for Christmas.

The MRI results came in at the end of last week, and did show that there are two tumors growing in Dad's lower back. The plan is, basically, to continue the steroids in an effort to shrink them, and to continue with the chemo. The nurse practitioner said that these new growths did not appear to be in quite the same places as the tumors Dad has had in the area before, which would mean that they might be able to use radiation on them if necessary (since radiation of this type and in this area is so destructive to the surrounding tissue as to be a one-time fix).

Hopefully Mom and Dad will be able to talk with Dr. Stadtmauer about what the growth of these tumors means, given that the chemo had been keeping the protein levels so low. The NP said something to indicate that the chemo Dad is on does not specifically combat the growth of tumors. So at this point we're trying figure out where that leaves us: does this mean that at this point the cancer remains stronger than we thought? What does the tumor growth tell us about the cancer's status that the protein levels do not? Apparently the thanksgiving week is not a good one for getting questions answered at the hospital, but we hope to know more soon.

So, a setback. A reminder that this fight is an ongoing one. Thanks for checking in.

...Dad started on the steroids yesterday morning and by the end of the day was already reporting a great reduction in the pain. The MRI's scheduled for Monday night. Please play that he will be able to sleep. He's exhausted, but the 'roids have him all hopped up.

Update:

Mom and Dad did speak to the folks at HUP on Wednesday, and the decision was made to put Dad on a five-day course of steroids. These have shown some success with shrinking Dad's tumors in the past, and the hope is that they will go to work on whatever lesions might be growing in his back, until the MRI can be be done on Monday. Thanks to the responsiveness of Dad's nurse practitioners and doctors, we can now be confident that something is being done about this new develoment while we wait for the chemo to be completed. Dad continues to take the oxycondone for the pain. Thanks to all of you for your emails and comments, and for your renewed prayers. More when I know more...

Hard to believe it's been another two months since our last post. I'm on here tonight to ask for your prayers about a recent development in Dad's situation. Dad has moved to a six-week chemo cycle, and is on the drip this week. His protein levels are still low (up a tiny bit from .1 to .2, but the doctor is unconcerned by this relatively small variance) and all signs are that the chemo has continued to be effective.

For the past few days, though, Dad has been experiencing gradually increasing pain in his lower back, pain reminiscent of that which, in the past, first indicated the growth of tumors along his spine. Yesterday the pain was particularly intense, and still worse today. He and Mom spoke to the nurse practitioner at Penn in the hopes of scheduling an MRI, but were told that since chemotherapy and MRIs can't be mixed, and the chemo is being administered this week, the earliest he could have the scan done would be Monday. She prescribed some oxycondone for the pain, which has helped but not solved the problem.

At this point Mom and Dad intend to call Penn again tomorrow and see if the MRI can't be moved up, and the chemo suspended if necessary, because Dad isn't sure he can push through until Monday. And if the tumors are back, then a few days' jump on any new treatment strategy might be beneficial. Please pray that the staff at HUP would be sensitive to Dad's situation and discern the wisest way to proceed. Pray for relief from the pain, and that the growth of any tumors would be halted. You may remember that Dad had some tumor growth this past winter, including along his ribs around his lungs. He was on steroids, in part to shrink the tumors, and this spring the doctors suggested that the lower protein levels and improved blood numbers, thanks to the chemo, were an indicator that the tumors also had subsided. The question now is whether the protein levels could be failing to register new tumor growth and the associated activity of the cancer, and whether the chemo is no longer working effectively against this particular manifestation of the disease.

...But that's really just anxious speculation from the non-professionals. Please pray for courage and faith for Dad and Mom, and for insight and inspiration for the doctors. Thanks as always for checking in. Mom and Dad and all of us have been grateful for these past few relatively good months and trust that God will continue to provide in every way for those to come.

Also Tuesday, September 9, 2008

Well, Andrew has--with great patience and perseverance--just finished his instruction to a very tech-unsavvy mom. Thanks to his dogged determination to get me to this spot, here I--Karen-- am, actually onstage and ready to communicate! Thanks again, son. And we do have new news to communicate to all of you, our dear friends and family, who have been praying so faithfully for us for all of these months (and years).
Roger's latest visit to Dr. Stadtmauer's office was this past Wednesday, September 3. We returned from that visit at 7:00 p.m., just in time to attend the viewing of our dear friend, Nancy Macha, who had died of breast cancer five days before. Very sobering, indeed. In so many ways the Lord has shown us that it is He who ultimately determines our first breath and our last--and that truth has been our great comfort, as well.
A few minutes ago we spoke with Dr. Stadtmauer's office and received the report from the blood tests taken on Wednesday. The results show that Roger's protein levels are at a very low 0.1! This is actually the lowest level since his diagnosis six years ago, so this news is really encouraging and a cause for celebration--we are so very grateful.
The flip side to all of this is that the chemo and the additional meds Roger must take every day have very strong side effects, as Andrew indicates on his posting just below. Dr. Stadtmauer hopes to mitigate some of them by the tweaking of chemo schedules and meds over the next weeks/months. Please pray for the Lord's leading on this process.
Thank you again for your faithful prayers and love--you are a continual blessing to us.

September Update

Thanks for being patient as these postings become fewer and further between. As you've probably deduced, this is a good sign. The cancer has been quiet, if not on retreat, and daily dispatches from the front would have been less than enthralling, the "front" having become more Korean DMZ than Omaha Beach.

Dad has been on a four-week cycle of the at-home chemo. While Erin and I were at 225 N. last week he was first hitting the bottom, then coming out, of the low phase following the chemo the previous week. He was extremely fatigued, struggling with the effects of the chemo and of the inevitable host of other meds, but over the course of our visit the color returned to his face, and he was able to participate a little more in the goings on. Dad and I built some shelving in the basement together, which was like old times.

This particular treatment has been more unpredictable and more taxing than Mom and Dad had expected, and Dad has had to bear up under many side effects, including intestinal unpleasantness, fevers, "chemo brain," and a deep, soul-penetrating weariness. On top of this, it has been very hard for him, and Mom, to see many friends and acquaintances also falling ill, often with other forms of cancer, with several dying in recent months. Last week Mom and Dad attended Nancy Macha's funeral, which was a moving experience for them, to state the obvious. (The Clarks are praying for you, Machas, as you grieve.) It is a paradoxical, profoundly "double" experience, facing suffering and death as a Christian. The pain and loss is real, all too real, but so is the promise.

All of which is to preface the good news, of which there are two parts: Dad's counts and levels are all in good places, with the proteins still at .2, which is a great number for a myeloma patient. This means the cancer is at bay, for now, and the chemo will be continued in an effort to keep it on its heels. The second positive development, given the difficulty of the current treatment, is that Dr. Stadtmauer decided last week, in response to Dad and Mom's hope, that it would be safe to extend Dad's cycle from four to six weeks, giving him two more weeks "off" after each dose, more time to recover and, hopefully, to enjoy some normalcy. Please pray that this regimen would be as effective against the myeloma while giving Dad and Mom more "quality" down time.

Thank you for praying. Mom and I are scheduled to have a blogging tutorial, so you should be hearing from her on here soon...but let's not count our chickens. Like the Boeing 787 and the full-service robot butler, this debut has oft been heralded, promised and hoped for, but, as yet...only...(*crickets*).

Taking Stock

Very encouraging news from Dr. Stadtmauer on Monday. Dad's protein levels have dropped further (more so than after the previous stage of the chemo), down to .2, compared with the high of 3.8 about six months ago. Given that the protein levels are the most reliable indicator of the myeloma's activity, this is a great sign. Dad's platelets are also much improved, up to two hundred, which actually puts Dad in the "normal" range. To put this number in perspective: back in February and March Dad was struggling with single-digit platelet counts, with transfusions required just to get him up to the twenties.

So all of the lab numbers are heartening. The plan is still to go ahead with the Cytoxan (cyclophosphamide) treatment, starting this week or next, for 4 days every month, barring new developments. This chemo drug is one of the four he has been taking for the past months (the "C" in "CVAD"), and has shown good results as a "maintenance dose" chemo for myeloma patients. Dad is thankful to be spared the hospital routine with this treatment, as he can now be doped and monitored in the comfort of his own home.

Mom and Dad had a very nice, if hectic, Father's Day weekend with the family, and anticipate numerous visits from out-of-town family and friends this summer. Please pray for wisdom for them as they try to pace themselves and keep Dad healthy. Pray that Dad's immune system would maintain this new strength and not be overly compromised by the continued chemo. Pray that Dad would be protected from the short- and long-term side-effects of these drugs. And thank God for his mercies and grace over the past few months, as we thank him for all of you and for your many acts of love towards Dad, Mom and the whole family.

What's Next

Hello all. Dad reports that he's recovering well from the latest chemo, still tired but feeling better than last week. He's been able to spend some time working in the garden with Mom, and he was talkative and chipper over the phone, too, all of which is encouraging.

At their visit earlier this week, Dr. Stadtmauer indicated that he wants to go in a new direction with Dad's treatment. While Dad and Mom had understood that he would start on a milder, oral chemo at this point, Dr. Stadtmauer has decided instead to proceed with one of the drugs from the CVAD regime Dad's been on, administered intravenously from a device worn around his waist--from the sound of it, sort of like one of those portable insulin pumps for diabetics. Kind of a chemo fanny pack. While you struggle actually to picture this, just note that it'll be a more aggressive chemo than the oral forms, but not requiring a hospital stay, for which we're grateful.

Please pray that Dad's newly won health will be preserved by these measures, and continue to thank God for the remarkable improvements in his condition over the past few months. We will keep you updated. We might ask you to pray as well for Nancy Macha, who, if you didn't know, is an old New Life friend also battling cancer. She and her husband Dan found out a couple of weeks ago that the cancer had metastasized to her liver. The situation is grave, and she is now on a very intense chemo regimen.

Dad is scheduled to be discharged today. The latest lab reports are in, and his protein levels have continued to decline, though at a slower rate. Dr. Stadtmauer plans to see Dad again in three weeks, with the expectation that he'll be starting him on a less aggressive oral chemotherapy regimen, basically as maintenance dose to try and preserve the gains Dad's made.

Dad has been coping with various side effects for the past couple of days, but we're grateful that he's been spared some of the worst effects associated with this hardcore chemo, i.e. mouth sores, vomiting, and the like. Nurses from Penn will be visiting him at home this week to take blood and administer transfusions if necessary. His blood cell counts too have been much better than during the initial rounds of this chemo.

Thank you all for persevering in prayer for Dad. We thank God for answering those prayers so mercifully over the past few months.

Begin the Beguine

We're just about dancing. Dad finally got a room at 7 last night, but unfortunately the doctor who would have ordered the chemo had gone home by then, so no drugs until today. The chemo recipe was sent to the lab by Dr Tsai at about 10:30 this morn, so hopefully the stuff'll be hooked up and dripping by mid-afternoon.

Dad has been feeling better the last couple of days--his birthday, by the way, was Monday--so perhaps the delay was for the best, allowing his condition to improve a little before he would be subject to more chemo. Thanks for your continued prayers and concern.

Heard from Mom last night. Dad was scheduled to start the last round of this course of chemo yesterday, but he was told not to come in until he got a call from Penn informing him that they had a bed for him. The call never came, except, late in the day, to tell them that there was no room in the inn. Yet to hear the word for today, but please pray that Dad would get a bed. We'll keep you updated.

The Latest

Please continue to pray for Dad as he prepares to go in for the last dose of this chemo next week. He has been feeling good overall, but is noticing the cumulative effect of all these chemicals on his body. His skin in particular has been painfully sensitive, and he's been subject to those chills again.

Mom and Dad got the word from Dr. Stadtmauer last week that he wants to proceed with another chemo course immediately following this one. This was somewhat discouraging for them, because they had been hoping that Dad would have a break from treatment, given how well this one has gone. But S-mauer said that because the cancer is now evidently at an advanced, aggressive stage, it is best to keep it back on its heels with continued chemo.

More updates to come. I'm still holding out hope that the old dinosaurs will get up on this thing and give you a firsthand report, so stay tuned. Maybe you can pray for that miracle, too.

A brief update:

Dad returned home on Saturday, as planned. He's exhausted, but hasn't suffered any serious side-effects this time around. The most encouraging news is that the latest labs showed still lower protein levels, indicating that the chemo has been increasingly effective in fighting the cancer. These numbers are actually the lowest they've been in years, comparable to the protein levels following the stem cell transplant four (?) years ago.

Due to room renovations, Dad ended up in another one of those "luxury suites" for the latter part of the week. Marble sinks, walnut molding, the works. Everything but a Louis XV armoire and a bowling alley in the basement.

One more round to go, scheduled to begin three weeks from tomorrow.

Round 3

Dad is back in the hospital this week for the latest chemo dose. His overall condition has continued to improve over the past three weeks--higher blood counts, lower protein levels--and he has had more energy and less discomfort.

Dad will likely be in the hospital until this Saturday night. He's been placed in a two-bed room this time around, which means that there is no space for Mom to stay overnight. But it's also a good sign, as it's because Dad's immune system is stronger that he's able to share a room.

The overall prayer request continues to be that the chemo would be effective in destroying the cancer cells without doing too much damage to Dad's organs and immune system. Mom has also asked for prayer for their interactions with Dad's roommate, that they would be able to be "light and life" to him.

As those of you who have been able to see or talk with Dad recently know, the difference between four months ago and now is like night and day. He is in every way stronger, more spirited, and simply more himself. We thank the Lord. This is more than we could have hoped for.

Prior to this latest hospital stay, Dad had been spending so much time in the garden that Mom had to struggle to keep him from over-exerting himself. But it has been such a pleasure for them to be able to enjoy the weather and the garden in springtime, especially a spring that Dad has said he didn't expect to see.

Thanks as ever for the prayers and support. More later.

Dad reports that he's been feeling pretty good since leaving the hospital where he received the second round of chemotherapy. He has had to get a platelet transfusion, but in general he's been able to function better than he has in months. Mom and Dad's small group came over to the house Sunday morning, and they had a little home-church, Acts-style. This is the first time that Mom and Dad have been able to get together with this group since December, so it was a real blessing.

Thank you all for your continued prayers. Pray that this chemo would be effective in fighting back the myeloma. Thank God that Dad has been feeling better, that his "counts" are generally good, and that he has had less pain and discomfort. We are so grateful.

A more thorough report is, theoretically anyway, forthcoming.

The lab report on Dad's protein levels is in, and the news is very encouraging. When Dad was admitted to the hospital in February, they were at 3.73; thanks to the chemo, they have dropped to .91. (Apparently, when a myeloma patient hits 1, doctors start treatment. So while this new count is not completely normal, it represents a huge improvement for Dad.)

Mom and Dad are back in their quasi-domestic routine at the hospital. Dad has decided to brave the hospital food (should you find yourself admitted to HUP, our man on the inside says take a pass on the collard greens). Dad sounds good, like his old self--really a world of difference from a month ago when he could hardly muster the energy to talk. He has started to feel the intestinal effects of the chemo, but nothing too extreme, and his spirits are good.

Even the climate has been home-y: the hospital room has been quite like 225 N Easton in winter (i.e., arctic). Now, Mom and Dad are not completely literal-minded about re-creating their home environment: they'd been turning the thermostat up, but to no avail. The heating vents were blowing super-chilled air, despite the thermostat reading 85 degrees. Dad had to wear a knit cap, ski goggles, and mittens (well, not mittens). Yesterday the maintenance guy came and said that, obviously, in order to get the thermostat to function, you have to turn the heat side down and turn the air conditioner side up to the desired temperature. Reason aside, the room has since become much more comfortable.

The plan is still to release Dad on Sunday. Thanks for checking in and praying. God hears.

another go 'round

Dad left a characteristically to-the-point message on my phone last night: They're in the hospital and will be there until Sunday.

This is the second round of the CVAD chemotherapy, administered intravenously and accompanied by numerous other pharmaceutical cocktails and supplements. Please pray that this course of drugs will build on the gains that have been made over the last month. Pray that Dad's various blood counts, especially that of his white blood cells, will be at safe levels. Pray that he'll be safe from infection, and that he and Mom would have the strength to persevere, in faith, through another hospitalization.

Let me renew our thanks to everyone for your myriad expressions of love and support for Dad, Mom and the whole family. What a moving thing to know how well and widely Dad is loved!

Easter time with Dad

It was a special treat to spend some brief but meaningful moments with Dad this Easter weekend. Here are a couple of photos:

Dad with Uncle Bill (visiting from France)

Mom & Dad joining us at the Marsh Easter gathering

Wednesday's Appointment, and a New Plan

The report from the visit with Dr. Stadtmauer at Penn was good. He feels that the chemotherapy is working effectively against the myeloma. Dad's platelets have climbed up into the 80s, indicating that he really is producing his own. They've decided that Dad can stop his trips to Abington for transfusions, unless the blood drawn by the nurse who comes to the house indicates another drop. His hemoglobin (red blood cell) counts are also up, though his white blood cell count has stayed at the recently reduced level; the report on the protein levels is not yet out.

The new plan is for Dad to return to Penn on Tuesday for the next round of chemo. This is earlier than expected, so Mom and Dad will get less of a break, but the doc feels that it's best to get while the gettin's good--to capitalize on Dad's gains now.

Thank you for persevering in prayer for Dad. Please continue to pray that his white blood cell count would improve, and that he would be protected from infections over the next few days. Pray that Dad and Mom would have the endurance they need for this chemo marathon.

Dad and Mom are so glad to be home. Thanks to all those who are bringing meals; Mom reports that it has been such a relief not to have to worry about dinner every night. Dad has been feeling pretty good for the last few days. Not exactly 100%, of course, but then compared to last time he was home, he feels like a million bucks. He has been to Abington for one transfusion so far, and will return today for another. Blood tests have shown an improvement in his red blood cell count, as well as--wonder of wonders--his platelet count. For the whole time he was in the hospital Dad needed daily, sometimes twice-daily transfusions just to keep his platelet numbers hovering, weakly, in the 20s (i.e. twenty-some thousand per tiny unit of blood). Two days ago it was 60, and while "normal" would be between 150 and 400, this represents a significant improvement for Dad, especially since for a while there his body was unable to maintain even those lower levels on its own. Thank the Lord: this is a specific answer to specific prayer.

Please continue to pray that these numbers would climb. An area of concern is Dad's white blood cell count, which had fallen as of that last blood check. Dad is going down to Penn tomorrow to see Dr. Stadtmauer and get a read on his protein levels, which, as many of you know, are a key indicator of the myeloma's activity. They will decide when to begin the next round of chemo. Stadtmauer will be away until the beginning of April, so Dad will be "off" at least until then.

Thanks for checking in. We'll keep you updated. I'm even going to try to get the Aged P's up on this thing (provided they have the energy), so stay tuned.

Home Again, Home Again, Jiggety Jig

I talked to Mom this evening and she said that they were VERY happy to be home. She also said that Dad spent a couple of hours downstairs once they arrived, and ate dinner before going upstairs to collapse. She wanted to thank whoever left a meal tonight, it was such a blessing to have a dinner waiting for them when they walked through the door. She said they have been overwhelmed with thankfulness to everyone who has helped out, provided meals, sent cards and prayed for them.

Dad was discharged today after receiving two bags of platelets. A home nurse will be coming by this weekend to check up on him, and then on Monday he will go to Abington to receive his next transfusion. Their prayer requests for this weekend is for Dad's platelet levels to remain stable, and that there will be no episodes of bleeding.

Home again 2.0

The present plan is to send Dad home this afternoon. He received a bag of platelets yesterday, and they're going to double-bag him today and hope that holds through the weekend. Whether or not his platelet production is going to recover is uncertain, but the doctors feel they can adequately monitor Dad's situation at home and bring him in for necessary transfusions as an outpatient.

Dad has been feeling pretty good, for the past couple of days going on walks around the ward, trying to get his strength back. Besides this platelet business, please pray that Dad and Mom will be able to enjoy their time at home, and be rejuvenated before they have to come back again in a couple of weeks for the next round of chemo.

According to Dad's blood tests today, the transfusion he got yesterday made no real difference in his platelet count. It seems apparent that he is still not producing his own platelets. Dad, Mom and their doctors have decided to postpone his homegoing at least until tomorrow, but probably for longer. (The strategy today was to skip the transfusion to see if his numbers will actually drop.) Mom and Dad are disappointed, of course, but prefer to stay put until Dad is no longer dependent on daily blood refills. Please continue to pray that Dad's body would recover that platelet-producing function.

Incidentally, all of this blood comes from the Red Cross, where platelets in particular are often scarce. This is because they have a shorter shelf life than other blood components and are a small proportion of any given donation, so that one transfusion of platelets typically includes cells from 5 or more donors. If anyone is interested in in a direct, "tangible" way to help Dad and patients like him, you might consider donating blood. You can find a blood drive or donation center here.

Going Home (we think...)

If all goes according to plan, Dad will be going home this afternoon. Monday night was fever-free again, though Dad had some difficulty sleeping. His white blood cell counts are continuing to recover, and the adjusted mix of antibiotics appears to be working against the staph infection without any further side effects. The platelets remain an issue of concern. It's still unclear whether Dad's body is producing its own in any significant number, since Dad has continued to receive daily transfusions, and when they tried holding off on the transfusion to see if the numbers would stay put or rise on their own, they just dropped further. But the doctors at this point believe that Dad can go home and return to the hospital for tranfusions two or three days a week, if necessary. The plan is for a nurse to come out to the house twice a week to draw blood for lab tests, and to schedule the transfusions accordingly. Of course, the more times a week Mom and Dad have to make the trek down to HUP for what often amounts to an 8 or 10 hour day, the less sense it makes for him to be home at all. There is some possibility that he will be able to recieve the transfusions at Abington Hospital; our prayer is that that would work and that the two hospitals will be able to cooperate in a timely and efficient manner.

Thank you all for the hundreds of prayers and other words and acts of love and concern for Dad during this hospitalization. By every measure, Dad is doing considerably better now than he was when he was admitted two and a half weeks ago. Given the extent of the myeloma's advance, as indicated by Dad's pre-chemo blood counts and the bone marrow biopsy, Dr. Stadtmauer has indicated that Dad will need to come back for another round of chemo at the end of the month. So we might pray now that Dad's recent gains will be preserved and increased by the next round.

Last night was Dad's best night in a long time, since even before he was hospitalized. Every night for a couple of months now he has endured chills and sweats--he typically soaks through his pajamas, sheets, and the towels placed under him. But last night he slept through the night without any serious issues, and he was basically fever-free today. Add to this his slowly rising white blood cells counts, and tentative reports that his platelet count may be stabilizing, and you have a pretty good day for Dad. Mom reports that all the nurses have been commenting on how good Dad looks. Both Mom and Dad sound really upbeat, which is a great sign, too. They were actually able to relax--not merely to "rest," but to enjoy themselves, to have a bit of normalcy, a space to breathe, the wonderful sensation that they need not, right now, defend this particular inch of ground against the cancer. Dad did a few sudoku, Mom did some crossword puzzles. Dad was not hooked up to a single machine this afternoon. No, we're not out of the woods, but this was a kind of sunlit clearing. We are thankful to God that the fevers have, for now, left Dad, and his "vital signs" are good.

Yesterday evening before bed one of the nurses whom Mom and Dad have gotten to know came into the room and broke out into a gospel song for their benefit, and when she left Mom and Dad found themselves looking at each other in delight and gratitude.

Our hope now is that this progress will hold, and will be the pattern for the future. Our prayer continues to be that the chemo would be effective against the myeloma, and that Dad's blood counts would rise. The platelet numbers continue to be the most immediate concern; they seem to have stabilized but the prognosis remains uncertain. The doctors have suggested that, if the platelet situation proves stable, making the risk of more bleeding low enough, Dad could be released from the hospital in two or three days.

Mom and Dad wanted me to thank all of you, their brothers and sisters, and to tell you that the Lord is listening to your prayers.

Sunday

Cara and I visited this afternoon, and not surprisingly were treated very hospitably by Mom despite her fatigue after another long night. Thankfully, her cold has greatly improved and, while Dad rested, Mom shared several tangible ways she saw the Lord’s sustaining grace carrying her throughout the morning. As always, her steadfast faith and encouraging spirit in the midst of this suffering really ministered to us.

In terms of Dad’s health, the good news is that his white blood cell count is starting to rise. He is, however, still experiencing chills and fevers several times a day and through the night.

Please pray:
1. that all of the blood counts (white, red & platelets) would rise. The platelet levels continue to be at the lowest level among the three.
2. that the doctors can identify all of the specific bacteria that are implicated in Dad’s fevers. They have pinpointed one and are tailoring the antibiotics accordingly. There is another bacteria that has not been fully identified.
3. for ongoing faith, perseverance and good rest for both Mom & Dad.

Thank you again for all of your support expressed in your blog postings, cards, practical help and prayer. Mom & Dad feel so loved and blessed by you all.

Saturday Afternoon

Mom wanted me to pass along the word that Dad's latest fever has broken. This afternoon he had been struggling with chills, sleeping fitfully. At one point he woke up and said he wanted to go for a walk. They took his temp and it was down to 98, and he and Mom walked around the floor while the nurse changed his sweat-soaked sheets. This was a small moment of reprieve for Dad and Mom, an answer to prayer.

Saturday Midday

Last night and today Dad has had a 103-degree fever. Thankfully a chest MRI they took last night came out more or less clear. The fever is consistent with the chemo, so nothing too out of the ordinary, but please pray that it would be brought under control and that Mom and Dad would continue to be sustained and encouraged.

Sat Morn

Dad has clearly entered that 7-10-day-after-chemo period where he feels, and is, the most wiped-out. For the past couple of days Dad has continued to struggle with a fever and its effects, especially chills and sweats. The fever seems to be due both to the sinus infection and to the daily transfusions he's been getting, to which his body often reacts as a foreign substance. One "bag" of platelets may have blood cells from five different donors, some of which will be less closely matched to Dad than others. It is the classic cancer scenario, isn't it? Battling the host of baby or pseudo- "cancers" caused not by the actual cancer but, precisely, by our best efforts against it. Medicines levied against medicines, the side-effects shuffle. That which we hope will cure us may yet kill us.

Dad has continued to struggle with headaches from the sinusitis, and his nights have been difficult, while he sleeps through most of the day. I spoke with him briefly last night and he sounded, to be frank, utterly low and exhausted. But his characteristic pragmatism, and courage, remained. Not a trace of complaint. In fact, Mom has said that it is sometimes hard for her and the nurses to know what Dad needs, because he doesn't complain. At its best, suffering is this sort of refining fire, in which the incidental and inessential are burned off, and the essentials of character emerge hardened, clarified, and in relief.

I was talking with Mom yesterday and she shared a story with me of God's faithfulness, and special care for her. On Wednesday, when things were so uncertain and the outlook so grim Mom was feeling especially vulnerable and alone. Dad was going to be going in to see the ENT specialist, and if he required emergency surgery, she would have no one by her side to pray with her as she waited. She just prayed to the Lord for his presence.
The orderly who came to wheel Dad down to the clinic immediately started a conversation with Mom and Dad. Within a couple of sentences it became clear that he too was a Christian. For the 10 minutes that it took to walk down he quoted scripture to them and just encouraged them in such a way that they felt the arms of God were wrapped around them. And then of course, the result of the examination was that the infection wasn't fungal, so my mom ended up not having to sit alone through the surgery.
My mom said that this was just one example of the way God has provided people each day they have been there who have either been Christians, or who have taken special interest in Dad. They have expressed repeated thankfulness that Susie is on the nursing team, and it is such a blessing for them to see her, and also the way her family has shown their love to Dad and Mom in this time. Even today Mom had to be away from the hospital for a period of time to go home and replenish supplies. It is hard for Dad when she is gone, but he had a special nurse who was very kind and attentive to his needs, and was able to care for him while Mom was away. These are just a couple of specific ways that they have been encouraged through this trial, and I know that each and every comment they get here is a blessing to them, and a way that you too, are God's arms of love around them.

Friday Morning

It turns out that Dad's infection is a staph infection, which is a bit more serious than previously thought, and will require a stiffer antibiotic regimen. Please pray that Dad will be able to hold up under both the illness and the cure here--which is of course our general petition in all this: that Dad's cancer would be defeated, and that the he would be able to endure the treatment.

His blood counts are still sliding. The platelets continue to be a big concern, and he received yet another transfusion yesterday. His white blood cell numbers are also extremely low--he is in fact just about neutropenic. The prayer is for protection against other infections now that his immune system is essentially non-existent.

The plan is for Roger and Karen to remain at the hospital through the weekend, so that the doctors can continue to monitor this infection and Dad's blood situation. Mom has full-blown cold now; the hope is that she will recover quickly and not pass it along to Dad. Both of them are obviously exhausted at this point. Pray for the deepest possible rest and for a special grace to uplift them.

Let me renew our thanks to all of you for your prayers, help and love. My parents have been sustained and heartened by it.

Briefly,

Dad had a test for the flu yesterday, which, thankfully, came out negative.

Mom has been fighting a cold. Please pray that she would kick it, and that Dad wouldn't get it.

Our main prayer continues to be that the chemo would effectively destroy the myeloma cells and that Dad would recover the ability to produce his own blood cells. Pray also that the antibiotics would effectively combat the sinus infection.

More tonight...

Good News!

Mom & Dad just returned from their visit to the ear, nose, and throat doctor at HuP. When they cleared out Dad's nasal cavities, they found no evidence of a fungal infection. His sinuses are inflamed & swollen, but fortunately can be treated with antibiotics, a far more desirable option than emergency surgery!

Dad is now resting, and he also went for a stretch of time today at a lower, more stable body temperature (he's had periods where he runs at a higher level).

Praise the Lord; Mom wanted us to convey her thanks and encourage you to keep the prayer support coming!

Some pictures to share...

Here are a couple pictures I thought you might enjoy of my parents and some of our family, this past October, at my cousin Megan's wedding reception. The reception was at Normandy Farms in Blue Bell. It was great to see both of my parents so relaxed and happy and my dad had enough energy to last through most of the night, with some energy to spare for dancing!!

I forgot to mention a couple things that we can be thankful for:

1. My dad is now free from his excruciating back pain due to the various painkillers he is on that are able to properly target the pain.

2. The doctors thought to do a catscan which found the sinusitis, so now they can determine how to treat it, once they figure out what kind of sinusitis it is.

3. The support and love of our many friends and extended family during this time. It really does mean a lot.

THANKS!

Today was a hard day for my dad. He had a high fever during the day and his platelet count was still very low, so he received two bags of platelets. Due to my dad's repeated battles with fevers, the doctor decided to do a catscan to determine what might be causing the fevers.

The catscan came back positive for sinusitis. The "good" news is that one kind of sinusitis is a lot less serious than the other. Bacterial sinusitis is the less serious kind of sinusitis and may only require antibiotics. The "bad" news is that the other kind of sinusitis, Fungal sinusitis, is more serious than Bacterial sinusitis, and could require surgery. The doctor told my mom that if my dad has Fungal sinusitis, it is an emergency situation. At this time, we still do not know what kind of sinusitis my dad has.

So, the ear nose and throat doctor came to my dad's room tonight to see if he could determine what kind of sinusitis my dad has. He stuck a probe up my dad's nose, but because my dad has had repeated nosebleeds and the nose pack [technical term?] was in his nose before they did the probe, there was "crusting"in his sinuses and the doctor could not determine anything. Consequently, he decided to have my dad sleep in a vaporizing mist tent overnight to try and loosen up the dry patches, so that, come morning, he might be able to determine what kind of sinusitis my dad has.

Also, several patients in the cancer ward on the same floor that my dad is on, have the flu and because my mom has been spending virtually all of her time in the hospital, they are concerned about her contracting it and passing it on to dad. So, she is wearing a hospital gown and mask to prevent any kind of possible infection.

So, I guess you know how to pray - 1. that the vaporizing tent would loosen up the dried patches of blood so that the doctor can determine the kind of sinusitis, 2. that the sinusitis would be bacterial and not fungal, 3. that neither my mom or dad would contract the flu, 4. that if my dad does have fungal sinusitis, that the surgery would be successful and my dad would be sustained during it, and 5. that my parents would have a constant sense of peace from God as they anticipate this next cancer hurdle, and that we would know how to support and care for them in the best way, that would really be a blessing to them. Thanks for your support.

Mom and Dad found out today that the doctors now want to keep them in the hospital at least until Wednesday (that's a de facto "them," as Mom has been living and sleeping there for the past 9 days). The doctors' most immediate concern continues to be Dad's low blood counts, especially the platelet numbers. Because of the recurring and persistent bleeding due to the low platelets, they are considering giving him a blood coagulant, but this would carry with it a risk of life-threatening blood clots. As it is, Dad has required daily, sometimes twice daily, transfusions, and it is hard to see the value in sending him home only to endure trips down to Penn every day, plus the risk of more nosebleeds that won't stop. So Mom and Dad are actually happy to stay put for the time being. Too, Dad's energy level is so low that a long trip home through the cold hardly sounds tempting.

The doctors are also concerned with the state of Dad's immune system as the cumulative effect of the chemo becomes increasingly manifest. (As I understand it, the expectation is that Dad's system will be at its weakest--and he'll feel the worst--about 7 days after the end(?) of the chemo--i.e. this weekend.) Dad has struggled with a low-grade fever for the past few days, and had another rough night last night with chills and sweats. A test for a urinary tract infection came out negative, thankfully; we are waiting for the results of a chest X-ray to check for signs of pneumonia, a particular danger for myeloma patients on chemo. Dad is already on a course of antibiotics as a preventative measure.

So. Please pray for wisdom for the doctors in deciding how to handle the platelet deficiency. Pray that Dad would be safe from blood clots if they decide to go ahead with the blood coagulant; regardless, pray that Dad's platelet count would stabilize and begin to climb. In general, our prayer is that all of Dad's blood counts--red blood cell, platelet, white blood cell--would rise--that is that Dad's body would again begin to make its own blood cells. Pray that Dad would be protected from infection on account of his weakened immune system.

Thanks for checking in.

Pictures

Here are some pictures to supplement Julie's entry.

Dad with Mom


...and Nana

....and Julie

...and Katherine

Clark Cafe- "Can I offer you some more coffee? How about some scones? Wait! I have some donuts here, or maybe a muffin?"

Visiting from Texas

First of all I want to thank God for making my visit to Philadelphia happen so quickly and smoothly. I was able to fly up on the red eye Friday. I visited with Dad and Karen a couple of hours then. I was also able to come back Saturday with my sister, Katherine, and Dad's Mom in the morning. Then I visited later in the evening by myself to say bye. After that, I caught my early flight home on Sunday.


My visit was very short but productive. I was able to see Dad at his best this week. At the beginning of the week he had been very sleepy. When I got in, he was already on 4 chemos and steroids. One of the perks of the steroids was that he was awake when I visited. I was blessed to spend such quality time with Karen and Dad. They were in good spirits in spite of the seriousness of his condition. They are taking his illness day by day. We were able to visit, talk and eat together. Daisy was right that room is truly very welcoming in spite of it being in the hospital. I felt like I was in the kitchen at home.


I was also so blessed to see the overwhelming amount of support our parents have received from friends and family. They are so thankful for and are so blessed with the prayers, cards, calls, snack, work details etc... Thanks for your continuous support.


I was truly glad to see Dad on those good days. By the time I left Saturday, the first round of Chemo was done. The doctor was trying to regulate his platelet levels in order to prevent future nose bleeds. His white blood cells were down. Karen wasn't sure at that point when or if he would be going home soon. However, we all felt that he was in the right place for the time being. The days ahead are going to be very hard. Next week is going to be a very tough week for him since he will be experiencing the effects of the chemo. Please pray that the chemo will work. Pray that his body will be strong enough to handle the chemo and replenish itself. Please pray for Karen as she cares constantly for him. Pray for her to have strength and endurance.

We love you Dad and are proud of you. You may be physically weak, but we know you are spiritually strong. Hang in there. Karen we love you too. We are so thankful for your love and devotion to Dad. We know he is well taken care of.

The Weekend Edition

Thanks for your patience, folks. I know you're all eager for more information on Dad's condition. I've been experiencing some technical difficulties on my end, but am miraculously back online for the moment.

Dad suffered another nosebleed on Saturday morning. Thankfully they were able to stop the bleeding more quickly this time, but his platelets were obviously low again, so the doctors gave another two "bags" of 'em. The blood levels initially responded, but were flagging again at last count; his white blood cells are also showing reduced numbers.

All of this is clearly due to the activity of the myeloma in Dad's bone marrow, preventing the proper production of blood cells. The results of the bone marrow biopsy confirmed this, indicating (as Mom explained to me) that 95% or more of the cells in Dad's bone marrow are tumor cells.

In light of this sobering news--the gist of which Dad, Mom and the doctors had already more or less grasped, but the hard data confirmation is still difficult to hear--our prayer is that Dad's bone marrow would recover the ability to produce healthy blood cells, especially, at this point, platelets. The hope is that the chemo would destroy the cancer cells while preserving the bone marrow's capacity to regenerate and begin to function properly. Please pray for this, and as always for peace and strength for Roger and Karen. Pray that their perspective would be that of eternity, and that their confidence would be not in drugs, doctors, bodies or antibodies, but in the person and promises of Jesus.

I talked with Julie, who was back home in Texas tonight, and she said that her visits with Dad this weekend were a real blessing. She, Nana (Dad's mom) and Katherine were able to be with Dad during times when he had the energy to talk, look at pictures, and crack a few jokes.

Thank you again to everyone who has called, emailed, sent cards, snacks and gifts, shovelled snow, given rides, fixed meals, prayed, and otherwise demonstrated love and concern for Dad and the rest of us, especially over the past week. We are all deeply grateful for every such act, even if we haven't been able to acknowledge your kindness personally and individually. We'll do our best to keep the news reported; y'all keep them prayers comin'.

The chemo officially stops dripping tomorrow, but the doctors have decided to keep Dad in the hospital at least until Monday. They want to be sure his condition is stable, and to run some additional labs.

Thank you all for your prayers and comments, emails and calls. It has been a moving experience for Mom and Dad--and for us kids as well--to see how our family and community have rallied in support of Dad during this time.

More details tomorrow. Today was a better day for Dad, largely because the pain meds had been increased. But Dad's main physician, Dr. Stadtmauer stopped by and said that Dad was looking better than he has in a week, and suggested that it may well be that the chemo is doing something good. Peace.

Thursday Night Prayer Requests

Today was a bit rougher for Dad. He was feeling still more pain in his back and was running a fever. The doctors have upped the dosage of the painkillers, both oxycontin and oxycondone. Both Dad and the doctors at this point believe that the pain is due to the growth of tumors in his back.

Please pray

• that the tumors' advance would be halted by the chemo, and that the doctors would have wisdom in treating this latest activity of the myeloma.
  
• that Mom would be able to keep Dad hydrated. He has been so drowsy and weak that she has had a hard time keeping him drinking.
• that his glucose levels would normalize.
  
• for Dad's spirits, that the Lord would give him peace and courage.

Today Mom and Dad received a card from Connie Stonehouse (Susie's mom) who said that the hymn "How Firm a Foundation" has been especially meaningful to her during difficult times. Mom quoted from this song during our call:

How firm a foundation, ye saints of the Lord,
Is laid for your faith in His excellent word!
What more can He say than to you He hath said—
To you who for refuge to Jesus have fled?

Fear not, I am with thee, oh, be not dismayed,
For I am thy God, and will still give thee aid;
I’ll strengthen thee, help thee, and cause thee to stand,
Upheld by My gracious, omnipotent hand.

When through the deep waters I call thee to go,
The rivers of sorrow shall not overflow;
For I will be with thee thy trouble to bless,
And sanctify to thee thy deepest distress.

When through fiery trials thy pathway shall lie,
My grace, all-sufficient, shall be thy supply;
The flame shall not harm thee; I only design
Thy dross to consume and thy gold to refine.

The soul that on Jesus doth lean for repose,
I will not, I will not, desert to his foes;
That soul, though all hell should endeavor to shake,
I’ll never, no never, no never forsake.

<>

October 4, 2008 ~ Multiple Myeloma Race for Research

Roger's Racers will be gathering on October 4, 2008 in Philadelphia, PA. Whether you love to run, walk, or even ride in a stroller you are welcome to join our family in the Multiple Myeloma 5K (3.1 miles) Race for Research. Save the date!

More about MM

For those who are interested in getting a basic grasp of Dad's condition, or for a refresher course, here is a link to the Muliple Myeloma Research Foundation, which provides a primer on the disease, as well as a ton of other relevant info elsewhere on the site. Of course, there is also some good stuff Wikiward. And no, I do not hold stock in Wikipedia.

Visiting

I entered the room, and after being warmly welcomed with a hug and kiss, I was immediately ushered into a chair and offered some horsd'oeuvres, a bowl of baby cut carrots, ranch dip, cheese cubes and crackers. Where was I? Why, at that downtown establishment, Clark Bed and Cafe! Well, techinically, there is only one bed, and it is occupied, but there are plenty of snacks for all.

Even being stationed in a hospital room, surrounded by blips of machines, the drip of chemo and the unmistakable smell of "hospital", Mom has managed to create a homey and welcoming environment. There is a small refrigerator stuffed (and only those who have seen Mom and Dad's refrigerator at home can fully picture this) with healthy juices and food. Over the sink is a shelf, where silverware, plates, and bowls are neatly stacked, as well as containers of healthy snacks. Under the window is another box of individual bags of crackers, kindly provided by a church friend, as well as a plate of homemade treats. On the wall is a bulletin board decorated with cheerful pictures from grandchildren, as well as kind cards from friends. Overall, it created an environment of love, and even normalcy, in a place that can be devoid of those home touches.

I spent about an hour with Mom and Dad as they ate dinner. Mom has been purchasing frozen, ready made items from Whole Foods and Trader Joe's to bring to the hospital for their meals. She said that she was planning on eating the hospital food, and giving Dad the "good stuff", but she couldn't stomach it. She asked, "How do they mess up EGGS? I mean, how can they make eggs taste bad?" So she is making sure that Dad has healthy food as long as he can handle eating, before the chemo makes him too nauseous.

Another blessing is that they were transferred to a nurse practitioner team for Dad's care. This transfer was facilitated by my good friend Susie, who has known Dad ever since we were kids, and who is a nurse on the team. They are glad to see a friendly and familiar face throughout the day as Susie comes in to check on Dad (he is not actually "her" patient to spare them both any embarrassing or awkward situations if he needed to be examined).

All and all, it was a very nice visit, and I was thankful to see that Dad was looking better. Mom also seemed to be in good spirits, and it was really good to spend time with them both.

Latest as of Wednesday Night

Some positive news last night. They were indeed able to unpack Dad's nose--to remove his "tusk," as he called it--thanks to the stabilized platelet count. Thank the Lord that Dad's transfusions seem to be working now--his red blood cell (hemoglobin) count has also improved.

We also found out that the new doctor/nurse practitioner team would include Susie (Stonehouse) Lee, who apparently made a special request to be on it. Hers has been a welcome familiar face, and her presence has been an encouragement to Mom/Karen and Dad/Roger both now and in past visits to Penn. For those of you who don't know, Susie was an elementary/high-school classmate of Daisy's, and the Stonehouses are a way-back New Life & Phil/Mont connection. (I will henceforth go easy on the virgules; that last one was both gratuitous and incorrect, I know.)

Mom said last night night that Dad was looking good, as good as he's looked in the past two weeks.

Dad's current chemo is a CVAD, a fairly traditional chemotherapy blend, administered through a PICC line, which delivers the stuff directly to a large vein near his heart. The acronym indicates the chemo drugs included, which are cyclophosphamide, vincristine, adriamycin and dexamethasone.

I promised info on the scans and biopsy results. There was some expectation of a CATscan floating around; turns out the CATscan was not performed. They did do a MUGAscan to check the health of Dad's heart before the chemo, and everything there looked OK. As for the biopsy, the results are expected to come through Friday.

Daisy visited yesterday, and Mom ran into Sandy at the house, where she has been helping out with the cleaning while Joe keeps an eye on the kids at their place. Cara and Ed had also been in to visit recently, along with Nana and Aunt Sue (Rogerdad's mom and sister). Karenmom also reports good visits with Marc Davis and Steve Young from New Life.

Trying not to overload y'all with info here, so I'll just finish with Mom and Dad's prayer requests. They ask for continued prayer simply that the chemo would be effective. Also, Dad's glucose levels are elevated, which may or may not be an effect of the chemo. He is on insulin to help his body process the extra glucose.

CVAD, PICC, CATMUGAhemoglobinsulinoxycondexamycyclosaline and so on "may or may not" be/do/account for this that or the other thing. Plenty of uncertainty here, which only reminds us that we are not in control, that the workings of Dad's body, like our own, are finally a mystery to all but one doctor. Please continue to persevere in prayer, as Mom and Dad persevere, in faith, through this treatment.

Teeny Update Blurb

More later, but I just spoke with Dad briefly. We had to get off the phone when the doctor came in to see him. The latest is that Dad's platelet counts appear to have stabilized thanks to the more or less daily transfusions he's been getting since he was admitted to the hospital Friday. This means that they'll be able to unplug his nose, which has been artificially corked to hold back the bleeding that's been plaguing him for the past week or so. Apparently the platelet deficiency not only prevents the blood from clotting, but predisposes Dad to bleeding in the first place.

I forgot to mention last night that Dad is also on Oxycontin (20 mg twice daily as of yesterday) for the pain. This has meant that he's drowsy, and sleeping most of the day, though the effect of the steroids he's now getting seem to have altered that pattern somewhat.

Mom was home this afternoon to buy more food and other supplies, and to take care of some housekeeping business. In order to spare Dad the hospital food, she's been buying organic foods (pre-prepared meals, whole grains, smoothie supplies, etc) at Whole Foods, storing them in the hospital room fridge, and doing what she can to prepare them there. Dad hasn't had much of an appetite, but she's been doing her best to encourage him to eat.

Talked to Julie last night. She's flying in from Texas for the weekend to see Dad and help out however she can. Julie has taken the initiative to keep many of us out-of-towners updated by phone over the past week.

Daisy will now be contributing here--in addition to her twelve other blogs--so Dad will be benefiting from some real blogspertise. I, meanwhile, was excited just to have added those embedded links up there. What's a link, you ask? (OK, I'll try to refer you to sites other than Wikipedia in the future. Baby steps.) We should be hearing from more sibs/kids in the future as well.

I'll give more news this evening, hopefully some word on the biopsy and scans.

Getting Situated

As most of you probably know thanks to Daisy's email, Dad finally started the latest round of chemo today. The drug is administered intravenously, and he is also on a steroid and anti-nausea medication to help him cope with the chemo's side effects. When I talked to Mom at about 4:00 EST today they were still readying the stuff, "mixing it up downstairs," as she put it; when I spoke to her again at 7 the brew was flowing and Dad was having a negative reaction to it, once again enduring "the sweats"; by about 10 he was doing better and seemed to be in good spirits. Mom said he got into the chair to eat around 5 this evening, and was still in it at 9--apparently all jazzed up on the 'roids. Mom thanks everyone for all their prayers and messages, including those she has yet to reply to. Please pray that Dad--and Mom--will be able to rest, and of course that the chemo will do its thing (without causing too much collateral damage to Dad's already weakened system).

This is Andrew, by the way. Despite my relative youth, I am not all that technoliterate, so I ask for your patience as we get this blog thing up off the ground. Mom's idea was to find a way that she could keep friends and family up-to-date on Dad's condition and treatment without her having to spend the time and energy to compose regular emails and/or call everyone. The plan for now is for her to given Erin and me the latest by phone, daily or so, and for us to post it here. Our hope is to set the page up for multiple authors, so that at least Mom and the sisters--and interested brothers/sons-in-law--can also originate posts and not be confined to the comments section and its lame fonts. Please contact me through the site with any suggestions or questions. I have set up an email for the purpose as well: [Removed]. ("ajclarkZOING!!" was taken.)

The look and structure of this site is likely to change a lot in the near future. Mom and Dad are ruminating on a title and Cara is supposed to supply a photo for the header. And if you're here, hopefully that means that the initial invitation email worked. More to come, tomorrow.

Courage, Dad. We're all praying.