John Robinson's Medical Update

A Gentle Passing, All Too Soon

2011-01-10T18:47:00.000-08:00

Our valiant John quietly passed away on the evening of January 9, 2011. His family had gathered with him for days, sharing stories and memories with each other, keeping the memories alive for John who was, we are sure, listening to every word. Lifepath Hospice sent nurses for round the clock duty and they were joined by caregivers from Rescare so we all knew he was being watched over vigilantly by those who loved and cared for him. John's memorial service will be at St. Mary's Episcopal Church on Sunday, January 16, at 1:00 pm.

Sadly, John's condition worsens

2011-01-07T08:54:00.000-08:00

We look back on our two weeks of holidays with the family and John participating happily as such a blessing and are grateful for those happy memories. As so often happens, once the visits with family were over, he seemed to "let down his guard" and his condition rapidly deteriorated. Hospice deemed it appropriate to provide continuous care, which consists of an RN or LPN being with him 24 hours a day. In addition, we've gotten extra help from Rescare, so there are two people with him, vigilantly watching and valiantly trying to make him calm and comfortable. The family's returned and I know it's comforting for him to hear familiar voices and to be at home. We remain stunned that this fate has befallen our special fellow and are constantly grateful for the outpouring of support and love that has come our way from all of you.

Christmas Traditions and Transitions

2011-01-02T14:22:00.001-08:00

Christmas has been a joyous time with all our children gathered round. We feel lucky that we were all able to enjoy visiting together and have many huge laughs as memories were shared and our little Soren entertained us. With nine or ten people coming and going there was a constant stream of stories to share and activities inspired by Christmas gifts of board games and card games. Having the time for a movie here and there was a blessing for our busy young folks and sharing cozy evening meals by the fire has been memorable. John holds his own, and continues to be upbeat and the anchor for us all.

We met our admitting nurse from Hospice on Friday who introduced our family to the team that will help us going forward. A second nurse visited on Saturday and another will come Monday to plan John's care with Ellen. John is glad to have some help for Ellen, and to have assistance provided at home, which will be so much less stressful than traveling to various health professionals around town.

Since John and Ellen will be at home most of the time now, they are happy to hear from friends for phone visits or to arrange to drop by, and calling the home phone works best for that. The number is 813 831-2635. All the best to everyone, and a happy new year. Dee

The Weather's Frightful, but the Fire is so Delightful!

2010-12-10T10:54:00.000-08:00

We've joined all our Florida friends and neighbors in settling in with a cozy fire, crackling in the fireplace, as winter finally descends on Tampa. These are great days for us with lots of reading, chatting and tv. John's condition keeps him from getting out much, but this week he managed to get to three separate doctor appointments that should help his life be more comfortable. He received his second infusion of Zometa on Wednesday, which should help strengthen his bones. On Thursday, he was back at Moffitt for his second guided cortisone shot to help with the pain in his right hip. And today he completed a thorough eye exam with the conclusion that removing a bad cataract in his left eye should help him tremendously with seeing more clearly and thus, being able to read more easily. This will be a huge help to him as reading has always been his favorite hobby and his poor vision has made reading much more of a challenge. His energy is up today and we look forward to his first visit with a home physical therapist this afternoon. Later, my sister Dee will drop by, as she does every day, to regale us with tales of life and children at St. Mary's School. We look forward to our entire family's arrival in a week or so and an extended visit with all of them through New Year's.

Thanksgiving was a time for THANKS

2010-11-30T11:03:00.000-08:00

Our family gathered around a bountiful table on Thanksgiving Day - just a quiet group of us - ever so thankful for the blessings we have. Will and Lauren gladly escaped the frostiness of Chicago for a few days in our Tampa warmth, and Dee's son, Sam, was home from Stanford. We enjoyed quiet visits, tv football and reading while they were home.

John had a rather non-eventful doctor's visit today and the outcome was that he will continue the treatment regime he has switched to for the immediate future. There will be further brain MRI and body CAT scans in the new year, but for now, we are hoping for smooth sailing through the holidays. The whole clan will be in Tampa, so our home will be filled with loving energy on a daily basis! We so look forward to gathering them all in.

Our Annual Christmas Card mailing has been curtailed for this year. So, for all of you, please know we wish you happiness and health for 2011 and a wonderfully blessed holiday season.

A Brief Stay at Moffitt

2010-11-17T04:36:00.000-08:00

Things certainly never get dull around here. We noticed some swelling in John's right ankle over the weekend. Our doctor requested John's presence in the Moffitt Direct Referral Center (sort of a triage emergency room) on Monday and ultrasounds showed a blood clot in his leg. Because of his history of brain tumors, he is not allowed to take a blood thinner, so inserting a filter to catch any breakaway clots was the required course of action. They kept him overnight Monday and we waited all day Tuesday for the 20 minute procedure to be completed - with no complications. My devoted sis, Dee, took the day off to be with us which was a huge help. We returned home Tuesday night at 8:30, tired as always from hospital time, but so glad to know the filter is in place. Hopefully John will return to his physical therapy efforts on Friday and we will enjoy a wonderful Thanksgiving with Will, Lauren, Dee and her son, Sam - home for the holidays from Stanford.

Cortisone shots today

2010-11-04T11:55:00.000-07:00

Conditions remain much the same here since I last wrote, Oct. 17. Radiation treatments have concluded and we continue to hope that they will help with John's hip pain. Likewise, the x-ray guided injections today of cortisone have a likelihood of reducing inflammation and thus, relieving pain. John will soon start on another kidney cancer drug, Afinitor, as results from the Nexavar he has been taking have not all been as we'd hoped. Upon much urging from friends and family, we are getting some home assistance three afternoons a week, which serves as a huge help for me. We look forward to a visit next week from John's sister, Margaret and his mom - both of whom will drive down from Atlanta.

John home and enjoying family visits

2010-10-17T19:22:00.000-07:00

John is home from rehab and working hard on regaining his strength. Our son, Will, visited last weekend and his stories of his new hometown of Chicago and of life with his beautiful new bride were energizing. Our daughter, Anna and grandson, Soren, arrived on October 14. We delayed my birthday celebration so that Soren could help with blowing out my birthday candles! Soren and Anna baked a delicious coconut cake and our special seafood dinner was provided by Jeanne Doney. Having an 18 month old around is really energizing!
John is going to physical therapy three times a week at TGH and is also having daily radiation treatments for cancer in his hips. We have more family arriving later this week, which is such a blessing.
Our plan, if all goes well, is to have a family Thanksgiving Dinner at the Yacht Club.
We want to express our deepest thanks to everyone who continues to support us. The twice-weekly meals on Food Tidings help us out more than you could ever imagine. Such a simple thing, and yet, so --- so very helpful. Keep those positive thoughts and prayers coming!

Release from rehab

2010-10-07T05:57:00.000-07:00

John's been doing very well, over-achieving as usual, and has beaten his projected release date from TGH rehab by a week! Everyone agrees he will regain strength and improve more quickly at home. Our son, Will, is heading home for the weekend, which will make John's homecoming even better. John's latest CAT scan shows a small bit of new activity with his cancer, so the medical team plans on changing his medication as soon as radiation treatment on his hip is completed. It remains an ongoing challenge to get "far enough away" from tough treatments to enable him to regain strength and some semblance of normalcy, but we continue to try!

Rehab Begins

2010-09-25T07:34:00.000-07:00

Even though John's hip surgery went well on Sep. 15, the remnants of pain and weakness continue to plague him. He spent a few days this week in the hospital at Moffitt getting thoroughly checked out. The good news is that most of his symptoms are being caused by strong medications, exhaustion and dehydration - NOT a return of cancer activity in his brain. He's graduated from hospital care to rehab at Tampa General, where they will do a full evaluation on Monday and begin his rehab workouts. He may be there for a couple of weeks, in Room 410 - he has a great view of the water and downtown Tampa - so we are trying to consider this time as sort of a medical "spa."

Surgery Complete

2010-09-21T08:49:00.000-07:00

John was in the hospital most of last week. His hip surgery was completed on Wednesday, the 15th, with the surgeon expressing "cautious optimism". Arriving home Friday evening, we realized the huge obstacle ahead of us now is physical rehab. The hip pain is diminished, but the cumulative effect of all he's been through will require physical therapy to rebuild his strength. With mobility significantly diminished for a while, we aren't out and about much now, so Food Tidings is open for business again. Thank you to all who have continued to ask if you can help in this way, and please don't overdo, we know you're busy! Just picking up something simple, small, and ready to go while you are already shopping is what we have in mind, as running errands is difficult right now.
Best to everyone,
Ellen

Autumn approaches

2010-09-02T07:25:00.001-07:00

And with it, changes in John's health picture. We did "make hay while the sun shone" and had a marvelous summer, complete with precious memories and lots of time together as a family. As the summer weeks went by, however, John's right hip began to pain him and an MRI showed that cancer in his hip was causing the discomfort. He's now scheduled for a surgical procedure in mid-September which should alleviate the pain and get him back on his feet again. New bone scans and CAT scans are also right around the corner - totally unpredictable what will be found. We are taking these hazy days of September easy, staying close to home while we await his turn in the operating room.

MRI Today Shows Good Progress

2010-07-27T14:44:00.000-07:00

John had the third MRI on his brain today and the results were encouraging. Of the 5 tumors he started out with, only 3 remain! And those have continued to reduce in size since the beginning of this saga, Feb. 15. We were so happy to see these results...as you might imagine! He will continue on the cancer inhibitor drug, Nexavar, until early October, when a new CAT scan will let us know if the cancer remains contained in the kidney or has spread elsewhere. Until then, we plan to enjoy our summer days as much as possible and remain so appreciative of everyone's interest, support and prayers. Hopefully, this will be the last blog update for a while. And that is great news for everyone!!!

Wedding a Total Success!

2010-07-17T15:06:00.001-07:00

Our son, Will, and his lovely bride, Lauren, were married yesterday in a beautiful ceremony - all went according to plan! John has been having a wonderful trip, filled with lots of activities and people. He even danced at the reception - something that would have been the stuff of dreams only a few short weeks ago. We now have planned some "down time" for us and will be here on Lanai for four days of napping, reading and relaxation while the happy couple wings their way to a honeymoon in Fiji.

Hawaii is beautiful!

2010-07-13T10:44:00.001-07:00

We have so enjoyed seeing family and friends, old and new, as we vacation for a bit in Hawaii prior to Will's wedding on July 16. John's hold up very well, pacing himself with naps and snacks, and looking forward to his role as host of the rehearsal dinner on Thursday night. But his favorite occupation of all, which can take place anywhere on the planet, is to play with our grandson, Soren!

Will's wedding is fast approaching!

2010-07-01T06:15:00.000-07:00

John's mom and sister drove down from Atlanta for a few day's visit, which was wonderful. We got to dine "out" for a breakfast and a dinner, which we figure is good practice for the "real world" of Hawaii. Having family around, talking about everything under the sun, is the best medicine of all. We were fortunate to have a lasagna meal from the Dobbins which fed us all, and last night enjoyed a yummy meal delivered by Leah Martorana from Fowler White. We really feel like we are in the final count down to departure as suitcases are coming out, notes are being written for the housesitter, and the fridge is being cleared of all our lovely leftovers. It is a miracle to be at this point, being able to say, we are going to our son's wedding! Prayers do get answered.

Awaiting the Wedding

2010-06-26T15:22:00.000-07:00

We had a wonderful, impromptu visit with Anna, Nathan and our 14 month old grandson Soren. He's walking all over the place, keeping us and his parents busy! We got out a baby pool for splashing outside, his parents had time for jogs and bike rides and we all spent plenty of time just visiting and enjoying being together. Fowler White (Deb Brewer at the helm) brought in a big meal for all of us from Bailey's which was savored with great enthusiasm. The weekend before they arrived, we were treated to a Juneteenth meal (complete with Big Red soda, which is an acquired taste) and after Norman educated us, we were able to celebrate a completely new holiday! Thank you again, dear friends, for continuing to support us in such a meaningful and helpful way. John continues to take early morning walks, goes to physical therapy and listens to CLE cd's, which help pass the time as we await our departure for Hawaii and making precious new family memories at our son Will's wedding on July 16.

UNEXPECTED DOC APPT RESULTS IN GREAT NEWS!

2010-06-17T11:35:00.000-07:00

John has been suffering from a swollen head (no, not a Big Head) and this condition had him in the Moffitt "Emergency Room" on Tuesday. The swelling has not involved his breathing, just his beauty. But it's been disturbing enough that Dr. Fishman decided to move the June 22 appointment up to this morning. We discovered that the swelling of his eyes, ears, nose and face is a side effect of Sutent (even though he's been off Sutent for a week) and that it will go away with massive doses of Benedryl over a few days. But the GREAT NEWS is that, while we were with Dr. Fishman this morning, we got to review the CAT scan from Monday.

The scan shows the tumor to be about 15% smaller. But, even better than that, it clearly shows that the blood flow to the tumor is greatly diminished - which is the actual result we were hoping for. Dr. Fishman said that the goal with Sutent had been reached - starving the tumor's blood supply. He really liked what he saw and said the next step is to keep John on a Sutent-type drug on an open-ended basis. Since Sutent has given him so many adverse side effects, the doctor recommended switching to Nexavar. John is to start on this new medicine after his side effects disappear and only at half-strength during our time in Hawaii. Then we will meet back with the doctor to reassess in late July. We are SO excited that our trip to Hawaii has now become a super reality! We are ready to take it easy and make some precious family memories in such a glorious location.

CT Scan Taken Today

2010-06-14T12:58:00.000-07:00

We spent another quiet weekend, punctuated nicely with lovely Italian food provided by Deb Brewer, and another always-welcome delivery of Flip Miller's home baked breads. Thus fortified, John got through the morning's medical testing with ease. We now must wait another week to hear the results of the CT scan - and will learn just how effective Sutent has been on his kidney tumor.

Last Week of Sutent

2010-06-06T04:38:00.000-07:00

Thank goodness John is heading into the home stretch with the inhibitor drug, Sutent. We scuttled the Sea Island trip planned for this week, because the drug is so draining, it's hard for him to feel like himself. We all look forward to his being off of it for a few weeks, regaining strength and getting geared up to attend Will's wedding. Since we will be bringing Tampa to Hawaii, John plans to wear his pirate outfit to the rehearsal dinner, and our centerpieces will be Tampa themed, complete with explanations of black beans and rice, cigars, pirates and sports teams! We were treated to dinner this week by Laura Barber, so thoughtful and welcomed. And ladies, if you are looking for a fellow who can really, really cook, check out Roger Robson! His "meal" was most amusing and memorable - and certainly would keep, with no preservatives, for decades! When I opened his foil wrapped "dish" I found fabric desserts festooned with restaurant gift cards and a funny note explaining how fortunate we were to escape his home cooking. It's amazing how our friends continue to lift our spirits in creative ways. We have reasons to smile every single day.
(posted by Ellen, uploaded by Dee)

Halfway thru this round of treatment

2010-05-27T06:34:00.000-07:00

This has been a quiet week. We are getting better at predicting the ups and downs of the medication, making small adjustments that help improve the quality of daily life. John continues to work in daily short walks and goes to physical therapy twice a week. He's been touching base with more folks by phone. He seems stronger, relaxed, and is tolerating the lack of activities like a champ. We enjoyed support this week from Marguerite Timmel and Nancy Crane - the meals were delicious! Notes from friends and family brought us up to date and keep us amused. We are looking ahead to June and hoping to make a trip to John's family vacation home in Sea Island to see his mom and sister and have a change of scene. Hopefully, he will feel up to the ride, with Dee and Ellen taking turns at the wheel.

Change of Watch at Tampa Yacht Club

2010-05-20T07:43:00.000-07:00

Tuesday evening, John was able to attend the Annual Meeting at the Tampa Yacht Club, which is also called the Change of Watch. He accepted the burgee as new Commodore, made very brief remarks, and headed home. We're so grateful to Norman Stallings, who provided transport and a sturdy arm. John was overwhelmed by the outpouring of support shown to him in this first "public" appearance since this saga began. Arriving home exhausted but happy, he recovered quickly. We've dined on Cuban food from Mary Margaret Docimascolo, Chris' Cookies from the Gonzalez family and a smoked turkey from the Chambers. We feel so blessed and thankful for all the help and good wishes. It truly is making a positive difference.

Sunday afternoon

2010-05-16T14:23:00.000-07:00

John continues to go to physical therapy and work on this at home as well. He started taking Sutent (the inhibitor) again on Friday, we hope this won't increase the fatigue which has abated a little bit. He will continue the Sutent for four weeks and on June 22nd have a reassessment at Moffitt. He's eating well, thanks to many friends offering tasty dishes. Harriet Plyler brought over lamb curry and Leah Martorana provided Thai dishes, all delicious and much appreciated. It's been so helpful we extended the food calendar through June. You can't imagine how supported we feel, thank you so much for notes, food offerings, and emails, it all helps and John remains patient and positive.

2010-05-12T12:31:00.000-07:00

John's physical therapy continued today with an hour's workout, followed by a restorative smoothie! His regular doc also cut back on some medication today that might be contributing to his general feelings of tiredness, so the saga continues as we work to get him back on track. A pasta meal from the Doney's is also what the doctor ordered - didn't they always say eat pasta when you work out?? Thank you so much to Jeanne for thinking ahead. :)

Some improvement

2010-05-08T09:54:00.000-07:00

John has been doing the PT exercises and eating more for a couple of days and we're seeing a little improvement in stamina. It probably helps that he is still on a break from the Sutent which resumes on Thursday. Yesterday he rode out to Moffitt with Ellen for some more bloodwork which was an exhausting event, but mission accomplished and back home for a rest. Flip and Rick Miller came by this morning with home baked bread to go with her strawberry-banana and champagne jellies, perfect for Saturday brunch, and we look forward to a salmon dinner this evening being prepared by Andrea Zelman, thank you!

John is well enough today to use his Blackberry for e-mailing, so we are all getting a little work done and enjoying this sunny day.