The Beauty in the Ashes

I remember watching my aunt care for her little brother. My uncle had very bad diabetes and my aunt fought hard to make sure he got the best care possible. When he went for his transplant evaluation at UVA I heard my aunt made several employees mad by the way she fought for him. She was scared and trying desperately to give him this last chance at a better life. Watching how she loved him, and how she just wanted the best for him, has given me better insight into the fears faced by these families as they watch their children suffer.

I met a father this week whose son had just been diagnosed with cancer. He is terrified that his son may be ripped away from him. He is at the best hospital in the world for his son’s cancer, and they don't have to pay a cent. Yet, since his arrival, Kevin has not ceased to push back at everything done to his son. He questions it all, asks if things can be done a better way, and is not afraid to let you know he is very angry. To the staff he is rude, belligerent, and seams to even be a danger. But all I can see is his fear. His son's cancer is not the worst kind he could have, and he has a decent chance at survival. But does that really matter? He is scared, alone, and angry that it had to be his son in this hospital bed.

I have come to find the medical community in general is much better at treating leukemia than solid tumors. Most of the leukemia patients had a pretty good chance at survival even if they were high risk leukemia. I mean, even if all else failed there is bone marrow transplant that gives hope even when nothing else works. It’s awful to watch these children suffer in the present but there is much hope that it is only temporary, and that someday they can lead a somewhat normal life.  But for brain tumors and kidney tumors, and bone tumors, the challenge is much different. Many children don’t receive a diagnosis until the tumor is in advanced stages. I do realize that the snap shot I have is a unique subpopulation of the worst cases of solid tumors in the country or even the world. But so far these cases seem much worse.

My first day on solid tumor I not only noticed the severity of the cases we were dealing with, but I also notice the major difference in the staff that work with them. There was a certain level of stress as expected, however, almost every NP, fellow, and attending I have worked with on solid tumor have a different level of hardness about them. Every day this week has been met with short remarks, cursing, and bad attitudes. At first I thought it was just the personality differences, but I really think it’s almost a coping mechanism even for these staff members. I cannot even imagine how difficult it is to continue to care for someone and their family, to go through all the complications with them, and all the emotions, knowing that all you do is not enough to prolong their few years on earth. I found myself getting frustrated with the staff, and wishing I could work with other people. But thankfully God gently reminded me to look at everything through their eyes. It is much easier to take in all they say and how they act when I take myself out of it. Don’t get me wrong, every one of them is excellent at their job, and they can turn off all their emotions and frustrations the moment they walk into a room. They bring wonderful care, but it takes a major toll on them and likewise I am sure it affects their families as well.

All week I wanted to point out to my superiors how this poor father mentioned above does not mean to be so offensive in how he has been dealing with them. I wanted to ask them to just sit and listen to him, to explain things better, or maybe just give him some time process. I wanted to ask them to take a step back and look at everything through his eyes, but I also knew that to do so, for them, might be too much. Everyone is coping their own way the best they know how. Thankfully, as the week has progressed, tension has settled and things with this father are better, but this won’t be the last time this situation occurs.

And then there is the issue of pain. As a profession we can fix pain, at least we can make it so that you don’t have to feel pain. But, it comes with its caveats. The delicate balance between taking the pain away, but not sedating the patient to the point that their family can’t talk to them, or to the point that the patient is not even aware of life. I have seen in these few weeks that children are so resilient. Through the worst of their disease, we can keep their pain away or at least tolerable, and if things are really bad, then they stay asleep the whole time and have no clue what’s going on. So many children can bounce back from chemo and even bad complications and go on to live normal lives. But, it’s the parents for whom my heart has been breaking these weeks. Day after day they sit and watch their child’s body battle. And sometimes it wins, and sometimes it doesn’t.

Needless to say, this week has been very difficult for me. It is hard to face these challenges each day. I find myself in prayer most of the day. Praying for mercy, for peace, for hope, for strength and endurance; and yet, in all the sadness I do see so much mercy. I stood praying for a young child as the thought occurred to me, “he seems so innocent, what did he do to deserve this?” and that still small voice, “Oh, my child, you all deserve this and so much worse. It is only my mercy and grace that confine this devastation to so few families. And even now, I have not forsaken them. I hear their cry, and I hurt with them.”

I am reminded of Hagar in Genesis 16, as she is fleeing from Sarah. There by a fountain of water God met with her. She was told that she would have a son, and that she should call him Ishmael, “Because the LORD has given heed to your affliction (verse 11c).”  She then called God his name El Roi, the God who sees me.

Sometimes I forget that at the same time that God is powerful, and holy, and just, that He is still perfect in His mercy, grace, and love. I can see the mixture of these attributes in these families at St Jude. His justice in allowing the consequences of sin and evil in this world wreak havoc on every human born in Adam, yet at the same instance his mercy in limiting this pain not only in the number of families who deal with it, but in each individual person watching them and holding them, whether they know it or not. “For they that sow in tears shall reap in joy” (Psalm 126:5). “You have taken account of my wanderings; Put my tears in Your bottle. Are they not in Your book” (Psalm 56:8).

God really is in control. In all His majesty and splendor, He alone can make beauty form the ashes. He is opening my eyes to more of the evilness of sin and the curse of death, and it is painful. It hurts and it cuts deeply. Yet, in seeing and growing in this knowledge of good and evil, I can say I hate sin more than I ever have before. And therefore, I see more of a glimpse of the awesomeness of God’s love, and my love for Him grows in exchange. The beauty in the ashes.