After the diagnosis of "kidney cancer," Todd and I never wanted to give
up believing that he was going to beat this thing and everything would be ok. The
first step was to have his kidney removed, thinking that would eleviate his pain,
and then pursue some type of chemotherapy to rid him of the remaining cancer completely.
Todd's urologist was thrilled to be able to get Todd into a program/study at NIH
(National Institutes of Health) in Bethesda, MD. We soon learned that this was a
government agency that were the best of the best.....and their services were provided
without any charge. Todd had to qualify for a study, and meet the specific criteria
for his type of cancer. This was a one in a thousand (or more) chance, but God worked
it all out, every detail, for him to be able to go there. We found out later that
Todd was considered "inoperable" in even the best hospitals in the Philadelphia area.
The tumor had totally taken over his kidney and was growing at a rapid rate.
The surgery at NIH lasted over 8 hours. There were tremendous risks involved;
however, God saw fit to carry Todd safely through the difficult surgery, but not
without grave consequences. Todd was never the same after the long surgery. Todd
remained in the ICU in Bethesda for 2 weeks and 2 days following his surgery.
Life was challenging, as I was needed to make daily major medical decisions
and to be close by, giving consent to countless tests and procedures as Todd was
unable to do so. I was also needed at home (3 hours away), to spend time with my
children, continuing to homeschool them and taking them to doctor appointments and
other necessary things. There were two worlds for me. One that seemed as if a dream:
long hallways with patients and doctors, gloomy waiting rooms, noisy and busy cafeterias,
hotel beds at night, and always filled with doctor reports that sounded like a different
language and never good. The other was home: familiar bed, comfortable living room,
and always filled with questions from little children (mostly easy to answer) that
sounded like music to my ears and almost always good. Yet when I was home, I longed
to be with Todd. I called the ICU often, asking his condition. When I was with
Todd, I longed to be home with the children. I called my Mom often, asking how the
children were. Before I left NIH I would need to give the nurses the location and
phone number where I could be reached....24/7. Before I left home, I would need
to give my Mom medication doses and phone numbers of the pediatrician and pediatric
GI specialist for our youngest two children. It was a very challenging lifestyle,
and it was clear that God was my strength through it all.
After the surgery Todd's life seemed suddenly fragile. In the ICU he was
constantly watched, constantly tested, constantly checked. He was too fragile to
move, so when procedures or tests needed to be done, the doctors would do it there,
in the ICU. It seemed as though the entire hospital and staff rearranged things
just for Todd. I remember one test that had to be taken outside the ICU and the
major ordeal that it was in moving Todd. I was overcome with emotion watching two
doctors, a surgeon, two ICU nurses, and two attendants carefully transporting all
of Todd's "things" as they wheeled him down the hall on the gurney. What a sight.
They cleared hallways and rooms, just for Todd. It was frightening.
Todd had teams of doctors trying to help him recover from the surgery.
He had a team of neurologists, because he sufferred a stroke and lost vision in
his left eye and his thoughts were confused. He had a team of cardiologists, because
he endured an infection on one of his heart valves. He had a team of immunologists,
because the sight of his incision was infected. And he had his "normal" team of
urologists, the ones in "charge" of his kidney cancer. These teams would gather
around his bed twice a day (sometimes more), examine him, and ask questions. They
would discuss in detail his "case" and what test or procedure or medication to try
next. Before I left the hospital in the evening, they would "report" their findings
for that day and let me know what their plans were. My head was spinning. I had
no idea what they were saying most of time, although they did their best to explain
things to me. It was all too much.
One day was particularly overwhelming when the urology team asked to
speak to me in private. The head of the department, Dr. Linehan, along with several
other surgeons and doctors, took me into a small room and sat me down at a table.
Some of the doctors stood, while Dr. Linehan pulled up a chair next to me. He began
to talk about Todd's condition and then said these words, "We are doing everything
we can to help Todd recover from this surgery. We've had many unforeseen setbacks.
However, we want you to understand that this cancer will eventually take your husband's
life. We're trying to buy as much time as possible for him. Without this surgery
he would have been gone in a week." He continued to tell me the severity of the
tumor, but I couldn't hear anymore. All I could hear was that Todd was going to
die. I was sick.
Todd was unable to understand nor comprehend any of this. His mind
was ravaged by the surgery, stroke, and medications. He would often call me at strange
times, and tell me I had to get him out of there, because they were planning on blowing
up the place, or other bizarre things. The nurses had to put him in restraints because
he would pull out his IV's and PICC lines, as well as pull off the bandage from his
incision. When I would come to sit with him, he would plead with me to let him loose
so he could get out of there. Then he would promise over and over that he would
be good. It was heartbreaking. When they finally allowed him out of his restraints,
he required a "sitter" around the clock, who would need to be sure he wouldn't harm
himself in any way.
Even through all this, everyone loved Todd. All the nurses and sitters,
and even doctors, would tell me how sweet Todd was. They were all cheering for him.
When he took his first walk around the ICU, all the nurses and doctors were clapping
and cheering him on. Todd would get a big smile and ask how they were doing and
when he could go home. He was a difficult patient, but a lovable guy!
After NIH doctors being continually asked by Todd when he could go home,
life changed drastically again for our family. The doctors at NIH thought Todd would
recuperate faster at home, and they wanted him to be able to spend as much time at
home as he was physically able. After four and a half weeks, Todd came home on March
13, 2005. God miraculously provided excellent care for Todd in friends and family
(and friends of friends) who were nurses and sacrificed their time to come daily
to attend to Todd's needs. One of my many weaknesses is in the medical field, so
this was a very needed task, as NIH would not allow Todd to come home unless they
knew he would be receiving the proper care he needed. Todd did gain strength each
day; however in April he began to feel weak. We returned to NIH in mid April for
more evaluations and to possibly begin treatments for the remaining cancer. Todd
tired easily, needed a wheel chair, and had no energy when we returned to NIH. It
was then we learned that the cancer had spread rapidly and no further testing was
possible because of his weakened condition. They told us to seek local help and
to call hospice. Back at home, Todd continued to get weaker and weaker with each
day. When the pain became unbearable, we talked to the children and called hospice.
After calling hospice on May 2, 2005, Todd's pain was lessened with the
mega doses of pain medications they left for us to give him. The hospice nurse explained
to me an "emergency box" that was to be refrigerated, locked, and used "much later
when Todd was in more pain and unable to move." Those were not comforting words.
They explained to me that gradually Todd would lose his strength, so they ordered
a hospital bed for him. Todd refused to sleep there. He didn't like it. However,
on Wednesday, two days after contacting hospice, Todd could not get out of bed. Hospice
came and helped us to settle him in the hospital bed. It was obvious the end was
approaching quickly. The "emergency box" was brought in the room, and we were shown
how to give Todd his medications orally, with a syringe, because he was unable to
hold a glass or even swallow on his own. Wednesday night some friends stayed with
me overnight, because we were unsure how long Todd would be living. I was scared
to be alone if he died in the night, so they stayed, despite my parents and six children
being here as well. Thursday we continued to watch Todd and give him his medications
every two hours. We sang to him. We talked to him. He tried to talk, but the only
audible thing he said was to me, "I love you." We had several pastors visit and
even call from across the country, and we continued to sit by his side. Friends
stayed again Thursday night. On Friday our house was filled with friends and family.
Everyone knew the end was near. It was horrible. In the afternoon, around 3 pm,
Todd began breathing differently, loudly, and with difficulty. I left the room in
tears, unable to listen or watch him struggle anymore. It had been two days and
nights listening for his next breath, watching him closely, and I could no longer
watch my love drawing so close to death. It was heartbreaking. Friends and family
remained by his bedside, but I felt like I deserted him in those last hours. God
gave a special peace, though, as I sat outside, walked aimlessly through the house
avoiding our bedroom, and tried to remember that God was in control and a very present
help in time of trouble. At 6:30 in the evening, my sister in law walked down the
hallway, looked at me, and we both burst into tears. She gave me a hug that seemed
to last hours. I felt sick to my stomach. I felt totally alone, even in the midst
of 20+ people gathered in my home. Todd went to heaven on May 6, 2005.