Wood, Hay, Stubble

We returned from a wonderful week in Colorado with some dear friends who sent us tickets so we could visit - they wanted to see us, and also didn't want me to be alone on my birthday. It is astonishing to know that we have such dear friends who care for us, who grieve with us, and who we can also have fun with. We went to hot springs, and up to Rocky Mountain National Park - where we saw snow in late July, and hundreds of Elk! It is such a joy to be with people who know and share our sorrow, but who also know how to have good times as well.

Although we arrived back home late last night, today we met with our son's primary oncologist to discuss the results of the autopsy report again - this time with the doctor who was primarily responsible for his treatment. It was hard to do this again, but strangely comforting to look into her eyes and see her genuine sorrow for our loss, and also her willingness to help us find ways to continue to build upon his legacy by perhaps helping to make things better for other patients.

I didn't honestly know how it was going to go - if I would be upset with her, or if I'd learn anything new; indeed, we did learn something quite new, but it was a great comfort. As we knew, the damage to his heart was extensive - in her opinion (and from reading the autopsy report) it seems most likely that the huge compromise on his system from the bacterial infection and concomitant toxins released by that infection caused his heart to get an especially strong 'demand' from his system. As she explained it, the 'electrical' system just went hay-wire and he most likely entered a state of atrial fibrillation - a cardiac arrhythmia that they had seen before, but which was much more extensive and powerful. The result was that most likely he simply became unconscious, and then died. Reflecting upon how he looked when we found him, this most certainly happened while he was asleep - no pain, no distress, but a quick and blissful release from this life.

There are many issues we want to work on - modalities of treatment, honesty and communication, and the hardest of all - some kind of monitoring for patients in his condition. I say this is the hardest because (as I told her) while wearing my 'father hat' I am somewhat relieved that he was not monitored - my fear is that he would still be in ICU hooked up to vents and monitors. She agreed that it is very likely that in that case, at some point they simply would have had to make a hard decision to remove life support. Not exactly the quiet and peaceful death he experienced. But she also said that in most cases, they would really desire to have at least a couple of beds where patients could be monitored more directly, without having to send them off to ICU or the cardiac floor where they rushed people in and out of surgery and weren't really prepared for the kind of treatment required of oncology patients. It is all a bunch of compromises, but we took notes, and talked about what we could do - in the Schwartz rounds (where they talk frankly about how things could be better, and to which we will be invited in November to talk about our son's case), and in other discussions with hospital staff and administration.

We have some very positive input regarding moving towards some kind of awareness, and possibly establishing an Adolescent and Young Adult treatment program (AYA) - which could help address many of the issues we were concerned with during his treatment.

As we left today, we understood that no one expected him to die that week - it was not clear that he was going to survive the summer - the transplant procedure, and all that entailed - his system was so damaged and compromised; but no one expected him to die when he did. There are clearly some things that will be learned about treating ALL in older adolescents which they learned from the autopsy - and perhaps it will even effect changes or modifications in the protocols. This is all good - though it won't bring back our son, it may help others in the future.

That is a nice legacy to leave - hard as it is.

So, then - what will our works be going forward? We both feel that in many ways our moorings have been severed - much of our life was devoted to making a good life and future for our son - a hope that he would have more than we did; and I suppose we did succeed in many way - but we never thought it would be so short. But we still press on - as Paul says in 1 Corinthians 3:

11 For other foundation can no man lay than that is laid, which is Jesus Christ.

12 Now if any man build upon this foundation gold, silver, precious stones, wood, hay, stubble;

13 Every man's work shall be made manifest: for the day shall declare it, because it shall be revealed by fire; and the fire shall try every man's work of what sort it is.

It seems already that the flames are lit - I can't know what this world will be like in a few years, but we have the confidence that our son is safe in Jesus' arms, and that while we are here we can work in the only way we know how to bring something better to this world because of his life. Our ultimate dream for an AYA program is not only the better physical treatment of that age group, but also a richer understanding of the social and spiritual needs they have - particularly when facing life threatening illness. I can't imagine how this might happen, but God knows. And if he calls us to some other task, I'm sure He will make it clear; for now, this is all we know.

We read a profound quote from C.S. Lewis last night in the book 'A Broken Heart Still Beats; After Your Child Dies' - a wonderful compilation of essays, poems, and thoughts by writers and artists on the death of their children, or reflections on the death of a child (given to us by our son's pediatric oncologist). He says in part (about his grief) "It doesn't really matter whether you grip the arms of the dentist's chair, or let your hands lie in your lap. The drill drills on."

Such it is with grief - but in his infinite wisdom, Lewis has captured something profound - for the dentist, despite all our pain, and the noise and discomfort, has a good end in site - the removal of a rotten portion of tooth (a cavity) and the replacing of it with something stronger which will prevent further damage. If only we can see God's hand in our grief in that wonderful way - we do not have to 'try' to redeem it to God's glory by being brave or righteous or some other unimaginable thing - but we must simply trust in the Great Physician's hands - and whether we grip the arms of our chair in pain or terror, or rest in the chair in trust and endurance, the end is the same - but we can trust His skill and intentions are for our good. As Phillipians 1:6 tells us "....he which hath begun a good work in you will perform it until the day of Jesus Christ".

And so we rejoice in the wonderful week we spent with friends - a week which passed all too quickly; but a week which reaffirmed the bond of friendship and love that passes all understanding - a foretaste of heaven, if you will permit me.

So then, let us indeed take heed how we build upon the foundation which is Christ. Pray for us that God may be glorified, and that our son may smile down upon us from Heaven and be pleased when we at last see him again in that glorious day.