Update - No Words

No words were necessary. The PET scan images graphically showed the verdict. Harold has significant new tumor growth throughout his liver and the rest of his body. We are past the point where medical treatment can offer hope. Our doctor and good friend kindly suggested it was time to transition to hospice care in our home, and wrote the orders. I asked what he would have suggested if this scan belonged to a young, newly diagnosed patient who hadn’t yet endured the rigors of immunotherapy, chemotherapy, brain surgery and gamma knife. The answer was the same: hospice.

We left our oncologist’s office knowing our close association had ended. With that closure I also thought of our surgeon and his nursing staff who have guided us through so much. I marvel that they are able to open their hearts to care, as they clearly do, when experience has taught them they will face many conclusions like ours today.

The next stop was down two floors to radiation oncology. We may be done with chemotherapy and surgery but Harold’s prognosis still allows for palliative care. Radiation treatment was started to treat the tumor near his optic nerve which is causing double vision and without treatment may soon take his sight. And, after viewing the PET scan results, they offered radiation treatment for Harold’s liver. Not as a curative measure but to shrink the largest tumor mass that is now causing Harold considerable pain. So far it is controlled by medication. There is a very slim chance that radiation to the liver may also reawaken a heightened immune response spurred by immunotherapy treatment a year ago. We don’t know how much his continued need for steroids may cancel that effect.

There is marked warmth and caring demonstrated in this department. These offered treatments, though not curative, buffer the emptiness of knowing medicine cannot offer long term hope. But there is another kind of hope that hasn’t wavered. It is a hope in our Savior, Jesus Christ. Last Friday when Harold was in the ER, I called radiation oncology to cancel the treatment he was scheduled to start that day. I had not previously visited the department, but when I called and explained Harold’s situation, the man answering the phone stepped out of his receptionist role to express genuine concern and declared he would pray for Harold; and I could tell he meant it.

This kind of hope, a faith in Christ, is the most powerful tool we have in times of need. It carried us through the long day yesterday. It carried me through calling our children last night and it carries me still as I try to put words to this experience. 

As we drove home yesterday I thought, “This day should be the worst day of my life . . . but it isn't.” I vocalized the thought then posed the question to Harold, “Is this the worst day of your life?”

Past the point of exhaustion and eyes closed to block the jarring of the road, his response was immediate and sure. “No," he replied, "it isn't.” Our son Darren, who had been with us for support, offered the same response. We feel calm. We feel protected. Nothing has changed. We still choose faith.


P.S. Harold has been so weak he has had difficulty eating and drinking. Dinner last night was broth. This morning for the first time in weeks he didn’t feel like throwing up. We “high fived” over being done with chemotherapy and its side effects. Then he said he wanted his special scrambled eggs for breakfast.

“You want me to make scrambled eggs?” I questioned, thrilled he felt he could eat.

“No, he replied, I want to make scrambled eggs!” And he did. This was the first time post surgery he has moved so confidently. He made and enjoyed a full breakfast.

Update - No News Yet

Harold had a PET scan Tuesday afternoon. This will let us know the status of the cancer in the rest of his body. We are meeting with his oncologist  Thursday afternoon to discuss the results.

We greatly appreciate the outpouring of support we have received during this challenge. It is amazing how much your comments, emails, calls, cards – actually any form of communication– lift us. We recognize you have significant challenges in your own lives, yet you pause to remember us and include our family in your prayers. We are humbly grateful. 

Calm

Harold was released from the hospital Sunday about noon. The trip home was exhausting but after a short nap he was up and dressed for church. Not that we were actually going, but in a way, church came to us. Our new granddaughter, Aubrey, was scheduled to be blessed in Sacrament meeting Sunday, but since Harold couldn’t attend the service, Megan and her husband Eric were given permission to have the blessing in our home. 

Our entire family was there. The blessing was followed by dinner and family photos in the back yard. As Harold and I sat watching them serving, teasing, laughing and loving each other, I leaned over to him and whispered, “Isn’t this what heaven is all about?” 

Later that evening we had the chance to talk, to share our feelings about uniting in faith and moving forward without fear. Then, as we've done since our family first began, we knelt together in family prayer. 

 Peace, Be Still.

 

Update - Rough Seas

We would appreciate it if you could add Harold to your prayers today. His condition has taken a sharp downward turn. 

Harold had gamma knife surgery on Tuesday. We were anxious to get it done as we knew he needed this follow up treatment to the area of his May 2nd craniotomy. There is always the hope that you just need one more treatment and you will be clear of tumors. The MRI prior to the gamma knife told a different story. Harold had six small new tumors in addition to the area already planned. One of these new tumors was putting pressure on Harold optic nerve, explaining the double vision he had just started to experience. 

That news alone was a blow, but it was followed by the word that gamma knife would not work on the area originally planned for the day’s treatment as the target had enlarged into a general area of concern. Additionally they could not use gamma knife on the optic nerve. A broader, gentler form of radiation was suggested, administered over ten consecutive days. The final piece of news was a recommendation that Harold have a PET scan soon as possible. The new tumors in his brain suggested that cancer was spreading in the rest of his body. 

Harold's surgon performed gamma knife treatments on all but two of the tumor areas, then sent Harold home to recover and process these new developments. A PET scan was scheduled for Friday along with doctor visits to plan the new radiation treatments.

Wednesday and Thursday were quiet recovery days. Harold was very tired, but that could be expected because of all he’s been through. He was particularly weak on Thursday night. I was grateful we would be seeing his doctors after the PET scan the next morning. I prayed that I would be alert to anything I needed to do in the night. 

I woke up around 4:00 am and noticed Harold breathing faster than normal. He seemed to be sleeping so I didn’t wake him but stayed alert to changes. Later when he did wake he seemed weak but otherwise fine, until he tried to get up. I helped him sit and then stand, but quickly discovered he could not support his own weight let alone move his own feet. I got him safely seated and ran for help. Preston and Rebecca were home and able to help me maneuver Harold out of the house and into the car. We raced to the hospital, calling ahead to the alerted the neurosurgery resident on call. 

Harold didn’t get the PET scan Friday or make any of his other appointments. Instead he spent the day in the Emergency Department overseen by a crowd of doctors. Initial exam showed his heart was racing and his oxygen levels were down. Later he spiked a fever and had sharp pains in his side. By mid day cardiac and blood clot issues were ruled out and there was a general consensus that most of his symptoms were caused by a seizure. The fever was a concern and prompted a round of IV antibiotics. Harold was admitted to the hospital for further observation. There was also a strong suspicion that the pain in his side was caused by tumor involvement in his liver. His PET scan, now rescheduled for Tuesday, will tell the story.

Harold’s oncologist took me aside to speak frankly about what this implies. I’m sure this good man and our strong advocate didn’t enjoy delivering the information he had to share any more than I enjoyed hearing it. If Harold has widespread cancer in his liver, there are no treatments left to offer.  

I returned home late Friday night exhausted, numb, and ready to cry. Actually, I did cry. Then I started thinking about the blessings of the day. I’d been prompted to action and had been able to follow through, getting Harold the necessary medical attention at the appropriate time. Two of our children were home to help. I would not have been able to move Harold on my own. I’d been able to give the doctors all the information they needed clearly and precisely. Rebecca had been able to stay with me all day, providing emotional strength while looking out for my physical needs. The rest of the family were prepared to come if necessary. 

Harold’s immediate condition improved Saturday. He was able to move, assisted by a walker, though still weak. He may be released to come home today. What comes next? 

I’ve had opportunity to reflect on the past 14 months as I also ponder next steps. We made a firm commitment at Harold’s diagnosis to choose faith. Should anything change now? Can we deny the miracles and blessings already received or the chance we’ve had to grow? Can  we deny the comforting feeling of being carried through our trials as if encircled by our Savior’s protecting arms? No.

We are still choosing faith. If it is our Heavenly Father’s will, Harold can be healed. That faith will not be swayed if it is not his will to do so. That faith is based on an absolute knowledge that our Heavenly Father has a plan for Harold and for you and for me. He knows our challenges and is ready to guide us through them. He sent his son, our Savior Jesus Christ, to show us how to live, to atone for our sins, and to allow us the opportunity to repent so we can feel the Spirit guiding us through the challenges of life. There is tremendous peace in that knowledge.

We also know we have to exercise faith. That means you persist, especially when seas are rough. We appreciate your faith and prayers in our behalf. The sustaining power of those prayers is real. It is through prayer, whether for ourselves or for others, that we are able to secure the blessings God is already willing to grant. It's our job to ask.

Update - Slow and Steady

The cumulative traumas of recent surgeries along with all the associated medications and chemotherapy have combined to make this a challenging recovery. Harold’s body is taking a beating, but day by day I see subtle improvement. Our strategy is one of patience as Harold makes slow and steady progress. 

Harold is working with a physical therapist to strengthen his left leg and improve his balance. There is an expectation of full recovery as his body gradually heals. Meanwhile he is able to navigate around the house with the help of a walker. Recovery will be slightly interrupted on Tuesday as Harold goes in for another gamma knife surgery.  The tumor removed in the May 2^nd craniotomy was active melanoma. It was growing on a major blood vessel located near at the back of Harold’s head. The surgeon could not cut this important blood supply but was able to cleanly peal the tumor off, leaving no microscopic evidence of melanoma. He will now treat that area with gamma knife as a further precaution against the tumors coming back.

We had debated last week about having Harold come home or having him stay in the hospital for intense rehab. We are very grateful he was able to come home. Despite Harold’s physical challenges we have enjoyed spending time with all our children and grandchildren. We have been the recipients of generous acts of kindness and have enjoyed the company of very dear friends. 

Update - Walking Again

Harold is much improved today. He was able to get out of the bed with minimal assistance and had the energy to work with the physical and ocupational therapists. Harold moved well with a walker and even climbed a flight of stairs. He does have some balance issues and weakness but has also shown improvement there.

We had the option of staying in the hospital for more acute rehab, but Harold may improve too much to qualify for it by the time they have a bed. We've decided on outpatient rehab and are going home today. Wahoo!

Update - Still in Hospital

Last week's surgery caused some weakness in Harold's left leg, It wasn't apparent until he got up to walk and discovered he couldn't stand. That startled everyone as we're use to Harold doing laps around the critical care unit. Saturday when Harold tried again he could move his leg while supported by a walker and a nurse on either side. His steps were slightly mechanical but he could move. It was a huge relief.

Things got even better on Sunday as Harold was able to get in and out of bed and use the walker without additional assistance. He visited with his surgeon later that day who added more encouraging words. He reminded Harold that immediately after surgery (while Harold was too groggy to remember) he had tested his strength, asking him to lift and move both legs. Harold had been able to do it. We were aware this surgery could cause permanent weakness so it was a relief to hear this mobility problem may be temporary, a result of swelling at the surgical site. "Give it a month," he said. "You will see big improvement."

I usually stay with Harold round the clock, but started feeling sick Saturday night and went home to rest. I didn't witness Sunday's progress but Harold had called with the report, even offering the possibility of coming home that day.  We decided to wait until he could be evaluated by physical therapy on Monday. Greatly encouraged, I arrived early this morning wanting to be present when doctors and physical therapists arrived. The Harold I saw was not the one reported the day before. His condition had literally changed overnight.

Harold was slow to wake and when he did he was hazy and couldn't finish a sentence. He had a headache. He needed help getting out of bed and and taking a few steps sapped his strength. I immediately suspected the cause, having watched Harold so closely this past year, and reported my concerns. My suspicions were soon confirmed. Harold had been tapered off his post-surgical steroids too fast and swelling was taking its toll.

Harold has slept much of the day which is probably the best thing he can do right now. Appropriate medications have been given and we anticipate marked improvement tomorrow.