Letter to Renee

November 21, 2008
Dear Renee:
I miss you so terribly much.
I don't know where to start.
When you were born you were a true bundle of joy. Never did we dream that you would not live to old age. Your initial transplant to correct your SCID condition was routine, with no real worries about your future health. After all, Dr O'Reilley and his team knew what they were doing. They had done it before.
You grew up to be a wonderfully cheerful young lady with tons of ambition and energy. Your Mission Statement was: To mobilize people into missions and to proclaim the Truth through the Arts.
You did that with enthusiasm. YWAM to Asia, leading a mission to Athens and Jordan, and becoming part of The Wave USA....
That got interrupted 1/2 way through the trip, in June 05. You were diagnosed with AML while in Cleveland. That took you to NYC for a successful round of treatment. Then CMU and Cap College. Work in the industry.
Till you got HIT by a relapse. You said "There is nothing more to write" on Oct 26, 07. You said in your last video, "I can't bear to hear a bad diagnoses." You cried.
You wanted to stay in Vancouver. To die there, among your friends. But the doctors all agreed that you should go to NYC again. You'd have a chance there. You cried.
You started chemo the day after you got to the hospital. The doctors talked about all kinds of new and wonderful treatments. After the 1st round, it took 40 days in the hospital, before your counts were high enough to go home. By that time you had developed a lung infection. Treatment did not clear it up, so they decided you needed surgery to remove the infection. By that time the leukemia was showing signs of returning.
2 weeks after the surgery, chemo started again. Dr Steinherz was so sad when he gave you that protocol. You cried and refused to go on Saturday. It was too hard for you. We pontificated until you gave in and dragged yourself to the hospital for some more of that dreadful chemo.
The plan was, that to help you recover after chemo, mom would donate cells that would boost your immune system.
This is where writing gets really painful.
Your mom and I were exhausted from the stress of your illness, compounded for all of us, by the devastating pain of our business partners voting us out of our partnership at a time when we were most in need of support. The pain of rejection and betrayal was almost unbearable.
I took too much time to respond to the pressures that resulted from that. Lynn had arrived Monday, to keep you company. Justin came Friday.
You went to the day hospital every day for more chemo, and we spent very little time with you at the hospital. One day I sat with you for an hour, and you showed me the protocol sheets from Dr Steinherz. I said, "that looks scary". We talked about the chemo and mom donating cells. I said I hoped that mom's cells would cure you permanently, and that you would not have to go through total body radiation, for that unrelated perfect match transplant. Your prognosis was grim but hopeful.
We had been told many times, that it is the parent's job to be there for their kids. We had been told to be there for you, to be your advocate, and when you needed me the most, I was not there to be you advocate. I was too distracted. How can I ever get over the regret of that?I so distinctly remember that Thursday morning. I was not able to sleep, so I got up and worked on the computer, doing emails related to the forced buy/sell. You knew you had to be at the day hospital at 10am for more of that dangerous chemo, and when you was ready to go, you asked if anyone was coming with you. I was not ready, nor was anyone else, so you went alone. I can still feel your pleading eyes on me, begging me to be there for you. I had not had a shower yet. But what did that matter. I wish I had gone with you.
I should have been the one to make sure the doctors knew you were having so much pain, diarrhea and vomiting. To make sure you got all the tests you needed. To elevate the level of care sooner. I knew you needed more care.
I keep kicking myself.You had told us that the doctor wanted to do a scan to see why you was in so much pain. Without me at you side, you had no advocate to make sure that that scan happened. So the scan never happened. By then you had been having anxiety attacks. You could not sleep without drugs. It was not till Monday afternoon that they took you down for x-rays. It took a long time for them to do the x-rays, and you were in a great deal of pain. I could see it in your eyes. You NEVER EVER complained.
Your mom was donating her stem cells at the same time, so I went down with you. It took a long time for them to bring you out of the x-ray room. So I went to see how your mom was doing. When I came back, you were still not out of x-ray. Eventually, they brought you out. Then we had to wait for transport to take you back to your room. I had to find more blankets to keep you warm.
You began hallucinating. You told Justin that Justin and I should go to Tio Pepe's Restaurante Mexicano - just a few blocks away in the Drive.
When you got back to your room, you were tired and wanted to sleep. When I checked you a while later, your skin was all flushed red. By the time mom came it was seriously red. She called the nurses. In the meantime, someone had decided you needed a scan. That meant you had to drink this litre of liquid dye. You started to drink it, but had a tough time with it. In the meantime, they discontinued your chemo 30 minutes ahead of schedule. Then they stopped you drinking your dye, because your condition was way too serious to think about a scan. You were in respiratory distress. Now you were not allowed to drink anything. You were so thirsty. The doctor allowed you to suck on a piece of ice that I gave you, "but don't swallow".
In the meantime they put you on 100% oxygen, but your blood gases continued to deteriorate. They brought in a a ventilator that pressurized inhalations. "Like Merrit had", you said. That felt like you couldn't breathe and you kept pulling the mask off. Finally they brought the big guns with a big red cart and a mechanical Ventilator. They asked your mom and I to leave the room. I said, "I love you", and you said "I love you too". Then they put you to sleep and installed the Ventilator. They worked on you for hours to try to stabilize you for the move to ICU.Your mom and I sat outside your room observing. Praying. Worrying.
By then it was too late. They moved you to ICU, but they could not stabilize you. Your lungs were not been working as they should. The finger oxygen detector said your oxygen level was good. When they did blood gases they found that your CO2 levels were way too high and the best medical care in the world could not save you. You went into multiple organ failure and your heart stopped beating 14 hours after that 5:30 am phone call Tuesday. If there is hell on earth, this is it.
Why did I not stop the chemo Friday? why did I not stop them from giving you so much fluid Monday to maintain blood pressure? fluids that eventually caused your lungs to fail and your co2 to go up causing the septic shock. we knew better. Kris was killed by a doctor that ordered higher fluid levels than necessary. if we had not had the unnecessary business stress would we have had our brains in gear?
How can you ever forgive me for failing you so badly?
How can I forgive myself? How can I forgive my former business partners? Certainly not in my own strength. Someone said that if God can forgive all human frailty, what right do I have to not forgive myself as God forgave me? Am I a judge more severe than God? What gives me the right to overrule His forgiveness? Intellectually that makes sense. I need to forgive myself. Maybe I have, maybe I do. But I will always regret that I failed you. That I allowed my business partners to control my agenda. I should have let the lawyers do that. They wanted to. Your mom told me to. But I wasn't thinking straight. So I allowed myself to be distracted.
You had shared your concern about your parents with Jane, the hospital chaplain. You were worried about us. Would we be able to take the loss of another child?