Passed

This afternoon Harold passed his mortal test and joined loved ones on the other side. It was a beautiful and tender moment while surrounded by all our children.

Update - Helping Grandpa

“Can I help fix Grandpa?”  

"Yes, Carly, you can. What would you like to do?”

Given the authority to choose, Carly became Doctor Carly and I could tell she was taking this job seriously. She retrieved the play stethoscope from the toy box downstairs then reverently entered Harold’s room. She gently “listened” to his heart then tentatively looked up at Grandpa. Next she helped me feed him, directing the delivery of each spoonful. Finally she patted lotion onto his legs and rubbed in all the love she could muster.

So what would you say to a four year old granddaughter who just wants to make grandpa better?
  
This was just one of the many bright moments that have lifted us as we've transitioned to caring for Harold in our home. 

Harold started the month in physical therapy with hopes of resuming racquetball. Today he is quietly resting in bed, weakened beyond the ability to take care of his most basic needs and sometimes, even too weak to talk. He has always taken care of us by providing, protecting, and leading. Now it is our privilege to reciprocate. Harold humbly lets us. It is a tender time.

The transformation happened quickly. We received the bad news of his PET scan on Thursday, June 6th. By the next day Harold was officially signed up for hospice care, allowing nursing staff to come to our home to help with pain management and other medical issues. That same day Harold met with a team of doctors in radiation oncology. They scheduled radiation treatments to be administered over the next five working days. The plan was to  treat a tumor threatening his eye sight and to reduce a large tumor mass in his liver which was causing him considerable pain. The goal in palliative radiation treatment is to improve quality of life, not to cure.

Harold became noticeably weaker over the next few days. By Saturday he could no longer chew food. On Sunday one side of his face and tongue were numb, and by Monday he had lost the ability to drink through a straw. It was determined these latest symptoms were caused by new tumor growth putting pressure on the fine nerves in the brain stem area. We shifted the radiation plan to target this area of concern. Then, if he still had the strength, Harold was scheduled to receive the liver radiation treatment on Thursday. We were very anxious for him to have it because he was experiencing regular bouts of intense pain in that area.

Thursday finally arrived, but by then Harold was totally spent. He had nothing left to give. It had been one week from the day we heard the PET scan report. Instead of receiving that final radiation treatment he slept, too weak to eat or talk or move. Throughout the day I sat by his side, watching him breath. I’ve witnessed a loved one pass from this life before, so what I saw with Harold seemed all too familiar. He was slipping away. As much as I hated to acknowledge it, I shared the observation with our daughter, Megan, who was with me for support. She notified the family.

At some point I went to the kitchen to eat. I remember standing at the counter gazing through the sunroom into the backyard. Suddenly I was overwhelmed by a feeling of lightness, of happiness. It seemed strange in these circumstances, but that’s what it was. I had a peaceful heart as I returned to Harold and looked deep into his face.

 “Megan, I’ve changed my mind. I don’t think Dad’s leaving us today.”

And he didn’t. Harold rallied to the point where he was able to have the final radiation treatment the next day. Five days later, he's very, very weak but he's still with us, sense of humor and all.

In all the ups and downs of Harold's battle, we continue to count our blessings. Here are a few:

Radiation

There was no guarantee radiation treatments would have the desired affect but we’ve seen some positive signs. The numbness on Harold’s face subsided right away and on Saturday Harold regained his ability to drink through a straw. Megan was so excited that she bought him a huge milkshake. He downed most of it. This is a huge improvement over our painstaking efforts to spoon feed him small amounts of nourishment.

Up until Friday when Harold received the final radiation treatment, he required more and more pain medication to cope. It may be too soon to say conclusively, but I think the treatment worked.  Harold hasn’t had any intense episodes of pain for the last three days.

Dog Pile

When our kids were small they would dog pile on our bed early Saturday mornings so Harold could toss them around and tickle them. Last Thursday evening as they gathered in our room, it felt like the tradition was back. Harold was in his recliner and I was on a chair beside him. Out of necessity our grown children were positioned all over our large bed. Their tickling and teasing reminded me of those early days. I guess in some ways we have not changed. Then I was overcome by how how truly blessed Harold and I are. We have wonderful supportive children.

Since that day they've figured out a system so I'm never alone. My children rotate caring for Harold during the night so I can sleep, and one of the family is always here with me during the day. Their summary of the plan is simple:  Mom’s job is to take care of Dad and our job is to take care of Mom.

None of us know what the next hours or days will bring. We take it as it comes. As I look back over the last couple weeks I realize we've essentially had a "dog pile" or convergence of support as each child, spouse, extended family member or friend, brings their unique strength to add to the whole. And the help has come just as we need it.

Rebecca, our only child living out of the area, surprised us by coming home in time to help during the radiation treatments. She took over the meal planning and cooking. She also accompanied us to the radiation appointments, serving as my brain trust and sounding board.

Rebecca had to go home on the Thursday Harold gave out, but by nightfall Harold’s brother Leonard, who had already driven from California to Arizona that day, was on a flight to Denver to help. We hadn’t asked, but he had anticipated our need.

How could we not recognize our Heavenly Father's hand in our care.

A Final Tender Mercy:

During Harold’s early rapid decline we were visited by a hospice nurse who wasn’t afraid to say what she really believed. We had been discussing Harold’s various symptoms and attributing them either to radiation recovery or cancer tumor takeover. I mentioned our oncologist’s estimate that Harold had about a month to live and wondered how his symptoms fit that timeline. Her response was immediate. She knelt in front of Harold, looked him directly in the eye and said, “Doctors don’t give the orders.” Then pointing upward continued, "He does."

“Harold you’ve got to have faith! I’ve had patients who entered hospice with an estimate of two weeks to live. They are still with us two years later. You’ve got to have faith.”

I just started crying at her words. What a timely reaffirmation of the choices we have made. And of course she’s right. Heavenly Father cuts the orders. He has a plan. Harold’s days will not be numbered less. We still choose faith.

Don't Worry About It

Harold’s a social person. Always has been, always will be. He loves people. That doesn’t change because he is ill and, short of divine intervention, may move on. Yet here’s the awkward part. What do you say to a person in that situation?

We’ve now had the chance to explore this question and here’s the short answer: Don’t worry about it. You can say anything you want.

Many conversations start with the phrase, “I just don’t know what to say,” and it’s true, we don’t; yet the very act of desiring to reach out speaks volumes. Often the last thing Harold and I do in the evening is to share the communications we’ve received during the day. Sometimes we laugh, sometimes we cry, but we always feel loved and uplifted

Think about your past interactions with Harold. Did you joke or plot some mischief? Did you discuss spiritual things? Did you try to beat him at racquetball or chase him down a basketball court? Did you work together on projects or organize some way to serve? Whatever your previous connection, share the memories. Harold cares about you and would love the opportunity to remember these precious times.

We have also heard that some who wish to communicate aren’t sure how to reach us. Phone calls are intimidating because you don’t know when it’s a good time. Though we always welcome your calls Harold may not be available to talk. Commenting on the blog doesn’t work for many and may not be the setting for the things you wish to share. Recognizing these challenges I have set up an email address where you can reach Harold anytime you want. I’ll make sure he gets your messages and when possible, he’ll reply.

You can reach us at westillchoosefaith@gmail.com

We Still Choose Faith

How can we choose faith when science and medicine show us there is little or no hope? In what or whom do we place our faith? And how can that faith make a difference?

These questions were laid on the table the moment Harold was diagnosed with stage IV melanoma, a statistically fatal cancer. But we had reason to believe Harold’s mission on earth was not yet complete. Individually we wrestled with it, Harold and I prayed about it, then we discussed and prayed about it as a family. We decided to choose faith. Faith that our Heavenly Father was aware of our situation, and that if we continued to act in faith, his promised blessings would come. We knew it would be a test.

As a parent you never want to put your children’s faith in God in jeopardy. Yet we need opportunities to exercise that faith so it can grow. Sometimes those opportunities come when we are very young and they provide a foundation for the tests we will face later.

My mother often reminded me of a faith promoting story from my early childhood. She was hurrying about, trying to get our family ready for church and we were almost late. But she couldn’t find the buckle to my little sister's shoe. Tension mounted as she frantically searched the house, calling my brothers to enlist their help. I kept trying to get her attention, tugging at her, calling her name. Instead she put me off, planning to respond as soon as she found the buckle. 

Finally I persisted enough for her to listen. “Mommy, we just need to ask Heavenly Father. He will help us find the buckle.” It was the natural response from a little girl who had just been taught she had a Heavenly parent who hears and answers prayers. Humbled, my mother stopped. We knelt in prayer, and by the end of the prayer she knew exactly where to find the buckle.

That story came to mind years later when one of my children lost something important. Christian had just started wearing a dental retainer. He had to take it out to eat, so during lunch he discretely wrapped it in a napkin and set it on his school lunch tray. It was only after he turned in his dirty tray and left the cafeteria that he remembered his retainer and sought help. The principal kindly helped him sort through the cafeteria trash but they could not find it. I only learned of the incident when I picked him up after school. Christian's normally cheerful face was downcast as he walked slowly toward the car. I watched him approaching but he wouldn't look at me until he got in the car and buckled up. Then he faced me and explained. 

I had a car full of kids and probably had piano students waiting at home, but at that moment my mother’s story came into my mind with such clarity that I simply asked, “Christian, do you have the faith that Heavenly Father can help you find that retainer if it’s possible to be found?” He said yes.

In retrospect I’ve wondered how I dared put his tender faith to the test in this way. The odds of finding the retainer were remote as I figured it may have gone through the food disposal; yet I had been prompted to ask the question and did. I took the rest of my children home then Christian and I offered a prayer and headed back to the school. 

By now all the trash of the day was in the dumpster outside the building. Christian had to climb in and hand out the bags one by one. Of course there were parents going in and out of the building as we picked through the trash. They gave us puzzled looks, but we just kept searching. Christian finally pulled out the last bag. We opened it and again made our way through the soggy mess of napkins, food, milk cartons, and wrappers. Then, near the bottom of the bag, it just appeared. My son’s faith had been rewarded.

There have been many opportunities for our family to exercise faith individually and collectively in the years since. I had my own battle with cancer eight years ago. I was sustained by the faith and prayers of my family and many of you. I can remember the feeling of being carried, even cradled as I underwent surgeries, the chemotherapy, the radiation and reconstructive surgery. We prayed that my life would be spared and it was . . . but only because it was Heavenly Father’s will for me at that time. Apparently he still had things for me to do.

What about Harold?

How can we still choose faith when science and medicine show us there is little or no hope? In what or whom are we placing our faith? And how can that faith make a difference?

We can still choose faith because we are not putting our faith in science or medicine. We are putting our faith in God. We are humbly grateful however, for the amazing blessings both science and medicine have offered our family and believe that knowledge is also inspired by God.

Our faith in God has grown with our understanding of His plan for us here on earth. He is very aware of our lives as evidenced by countless promptings and blessings received through the Spirit. He has an earthly mission for each of us to fulfill, if we will. Faith in God includes actively striving to understand that mission, and with Christ’s help, doing it. When we have fulfilled that mission, He will call us home. If God still has work for Harold to do, he will be healed in whatever way our Creator chooses. If he has fulfilled his mission, he will be warmly welcomed home.

Do we risk anything by choosing faith? I have come to understand that choosing faith does not guarantee the outcome or the timing we want. God sees the bigger picture and may instead do what is best for us. Choosing faith doesn't exempt us from the challenges of life. Instead it gives us power to get through them and grow. But choosing faith absolutely guarantees the quality of the life we live. 

Choosing faith has granted us genuine happiness. It has provided us with peace, and it has surrounded us with love. We still choose faith.

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.