18 ~ (Christmas 2003—March 2004)
God's Angel to Prepare the Way
Karis and Dan had a marvelous time in Turkey, appreciated even more because Karis had no idea when she would again be permitted to travel outside of the US. Nurses at the university health center helped her think through and pack everything she would need during the trip: TPN, fluids, medications, and all the paraphernalia that went with them. She had to use her entire luggage allowance for her medical supplies, so depended on generous sharing of clothes by her hostesses! The mystery and magic of Istanbul captured their imaginations: a gateway between Asia and Europe, East and West; a proud and ancient civilization coming to terms with the challenges of modernity.
Meanwhile in faraway São Paulo, Dave, Rachel, Valerie and I were adjusting to our first Christmas without the whole family together and praying that Karis’s crazy adventure in Turkey would not result in crisis or disaster. It's just as well that we didn't learn until later about the drama of Dan's and Karis's departure from Turkey. There had been several human bombs in the previous weeks and Karis was hooked up to a ticking device with a plastic tube going into her body! (Turkish airport authorities weren’t familiar with IV infusion mini-pumps and central lines.) Extensive security checks humiliated Karis, frustrated Dan on her behalf, and delayed them to the point of missing their flight. Their kind hosts intervened to help arrange alternate routing through Germany, but there the airline didn't want to honor their tickets! When the situation finally worked out, Dan arrived back to work in frigid New York City late for work and thoroughly exhausted.
They did make it back though, with the TPN and medicines that Karis depended on! The east coast was going through a historic cold snap, so rather than sightsee as planned, Karis spent her three days in New York City huddled in Dan's apartment, trying to stay warm and sleeping off jet lag.
Back in South Bend, along with starting the new semester of school, Karis had to complete a variety of requirements for going on the transplant list. The goal was to have every system of her body in the best condition possible before she underwent surgery, to avoid all preventable complications post-transplant.
Karis was listed for isolated intestine (small bowel) transplant on January 15th, 2004. We knew that she would not likely be called for transplant immediately, so I made plans to join her in South Bend in early February, after Valerie went back to school in Brazil following her summer vacation (the seasons are reversed in the southern hemisphere). When I left my husband, youngest daughter and friends in Brazil, I believed that I would be gone for just a few months. "I expect to be back for your graduation celebration in August," I naively assured a recovery support group. Friends in São Paulo offered their homes to Valerie (just turned 16) whenever her dad would travel, as he did often. We had considered the possibility that Valerie might study in the US for a semester, but she preferred to stay in Brazil.
Initially I stayed in a guest room in Karis's dorm, a convenient place from which to help Karis pack everything she wasn't actually using in everyday life, some for storage and some to take with us for six months of post-transplant recuperation in Pittsburgh. Whenever the transplant call came, Karis would be expected at the hospital in Pittsburgh within hours.
When the dorm guest space was needed by another family, kind friends let me stay with them just a few miles from the Notre Dame campus. Karis and I both had to carry cell phones, so that we could be reached at any time, any place. Karis had always disliked the way cell phones interrupted whatever a person happened to be doing, but now she had no choice. She had to adopt that lifestyle.
In mid-February, Karis received her first transplant call. I happened to be the one who answered the phone. When I told her what the call was about, Karis turned perfectly white and started shaking uncontrollably. Suddenly, she was terrified. “I can’t do this, Mom,” she gasped. “Tell them no.”
Afterwards we wondered why they had even called, because Karis had not yet completed the last of the requirements for transplant. But it was truly a wake-up call: After going through the evaluation in Pittsburgh, Karis had focused on finishing her semester at ND, then her trip to Turkey, then the beginning of the new semester. She had not yet thought and prayed carefully about making the transplant her own decision, not one imposed on her by the Pittsburgh transplant team or by anyone else.
The phone call forced Karis to think about “the good, the bad, and the ugly” of transplant that we had learned about during the evaluation time in Pittsburgh in November. She knew that if she had a transplant, for the rest of her life she would be vulnerable to life-threatening infections and to rejection. She would never again be free to travel where and when she wished, to live wherever she wished, nor to make other important decisions for her life without passing them through the grid of doctors’ approval.
Karis knew that the surgery itself and the long recuperation time would be a huge interruption in the flow of her life and friendships at ND. She knew that immunosuppressant medication was so expensive that her life choices would have to be shaped by her insurance options. She knew that intestinal transplant still didn’t have a very strong track record of success.
Dr. G’s words came back to her: “Transplant is not a solution. It is trading one set of problems for another.”
In trying to express her distress, Karis said, “I would rather be raped than go through transplant.”
The critical question was: apart from a spectacular intervention of God, did she have any choice? That was the underlying question addressed during her evaluation in Pittsburgh. The surgeons there did not feel she had any choice. They thought she had a better chance of living longer and with better quality of life if she had a transplant.
Karis tried to project what her life would be like if she did not agree to transplant. That scenario threw her back into despair. She was not coping well with her life as it was. She was desperately tired of being sick. She felt weary through every level of her being. At any time she could spike another fever, signaling another line infection. One of these days there would be no more place to put a central catheter, and therefore no way for her to be nourished. She would be back where she had been as an infant, facing the prospect of death through starvation.
"Lord, I would like so much for you to heal me, free me from all of this," she prayed. "If there is some way that transplant can bring you glory, though, may your will be done." It was hard for her to fathom how her suffering could be of any benefit to other people or contribute to God's purposes in the world, but she knew that God was able to heal her at any moment. His not doing so, despite the concerted prayers of people around the world, must mean that somehow he could turn even a transplant into blessing, improbable as that seemed.
Karis gained extra time for thought and prayer when she was hospitalized yet again for dehydration, with diarrhea that took days to get under control. The doctors decided to take advantage of the situation to remove all four of her wisdom teeth, a transplant prerequisite that she had not yet scheduled. Even her bruised and swollen face did not deter visits from many friends, who loved her no matter what she looked like! Someone started calling her hospital room the "ND party place."
Once released back to campus, Karis tried to catch up in her classes, but without much success. She was sick and in constant pain, deep-down tired out, struggling for energy to keep going. Since early childhood she had trained herself to ignore the dis-ease in her body so that she could "have a life," but at this point even her most tried-and-true coping strategies weren't working very well.
It became clear to Karis that she couldn't keep living like this for much longer. She was actually excited when her cell phone rang at 12:30 a.m. on March 27th, with instructions to show up at the hospital by 4:00 a.m. Ready now to say yes, she quickly said goodbye to friends and gathered her things. We were flown to Pittsburgh by private jet (none of the other flight options I had carefully set up were available when the time came), and then had a wild ride from the airport to the hospital, as the taxi driver broke all traffic rules to get us there on time. Nurses immediately began preparing Karis for surgery, which was scheduled for 5:00 a.m.
At 5:00, however, we were told that the surgery had been cancelled! Irregularities had been discovered in the donor intestine. As soon as Karis received an IV antidote to the immunosuppressant she had been given, we would be free to leave the hospital . . .
Leave—to go where??! We had been up all night, of course, so while receiving her antidote infusion, Karis sensibly went to sleep. Instead (once I let David know he no longer needed to try to find space on the next flight from Brazil), my mind whirled: what should we do?! We knew no one in Pittsburgh. We had moved from South Bend bag and baggage, at great expense, and suddenly our reason for being in Pittsburgh no longer existed! As offices began to open, I learned that there was no room for us at the Ronald McDonald House or at the Family Houses, we couldn’t afford the Residence Inn transplant wing, and in order to set up TPN delivery, the home health service required a “home” address, not a hotel.
It was an ideal set-up for a God-sized surprise.
“See, I am sending an angel ahead of you to guard you along the way and to bring you to the place I have prepared” (Ex. 23:20).
From John Wesley's prayer journal:
O Lord Jesus
I give Thee my body
My soul
My substance
My fame
My friends
My liberty
And my life.
Dispose of me and all that is mine
As it seems best to Thee.
I am now not mine, but Thine:
Therefore claim me as Thy right,
Keep me as Thy charge,
And love me as Thy child.
Fight for me when I am assaulted,
Heal me when I am wounded,
And revive me when I am destroyed.
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