Andrew was diagnosed with Erythroid (M6) Acute Myeloid Leukemia on November 4th, 2010 when he was almost 5 months old. Andrew is currently in remission from his cancer, after finishing his 5 rounds of chemotherapy. He is a healthy, happy toddler.

Wednesday, November 9, 2011

5-month CBC

It's time for a new post. I've been putting it off because there are some things I should probably say, but I hesitate to use such a public forum. First, though, is good news. Andrew's CBC from Monday looks great.

Hematocrit: 36
Platelets: 314
White Count: 7.4
ANC: 2600

He was able to get his flu shot at clinic (he'll restart the normal course of pediatric vaccines in December). Also, the Radiating Hope Marathon was a success! They'll be able to ship the particle accelerator to Senegal! There's also a bit of mixed news. I wanted to get the full story from our Primary Oncologist before I posted it on here. As many of you know, it turns out that the last round we had (round 5) was totally useless. We went into it knowing that it could either make a 5% difference on the rate of relapse, or no difference. It turns out, especially in cases such as Andrew, the latter is the case. No parent enjoys the idea of poisoning their child, but to know that I did it for no reason just about killed me. As I digested this information, I had a lot guilt about it, wondering if I would have delved a little deeper into the literature, would it have pointed that way? Or if somewhere along the line, did I just totally miss a prompting?

I wanted to know exactly what our oncologist knew at the time, but there's know way to know that. Anyway, he's required to follow the COG protocol no matter what he reads and put us all neatly into our little risk categories that determine the treatment protocol based on this risk factor tree that they all agree on. We put so much trust into our oncologists, and we always hope that they would treat our children the same way they would treat their own.

There are two things that have helped me this, both of which I remembered from General Conference back in April. One is a story that President Packer shared about a rural country doctor who came in the nick of time to save a mother in a moment of crisis during the birth of her first child. Although all seemed well, the mother died of an infection a few days later that the doctor had been treating from another patient that same night. The advice that was given to this young widower was, "John, leave it alone." Only as an old man did he see the wisdom in following that advice--that the bitterness would have cankered his soul and only brought misery to himself (, about 2/3 down the page). For the unresolved questions that I have about what we went through, I just need to leave it alone.

I don't know what the direct purpose of Andrew's suffering was. I remember the PICU doctors reassuring me that when Andrew was moaning under the sheet for hours that he wouldn't remember the pain because of the versed they were giving him through a tiny vein they found in his foot. Instances like these certainly weren't for his benefit or character-building, as I am sure he has forgotten it by now. I hope in the future I will be able to see how going through all of this will benefit us, but until then, I've thought a lot about the oft-quoted story that Elder Christofferson told, also in the last April conference. It's worth it to reprint here (

"President Hugh B. Brown, formerly a member of the Twelve and a counselor in the First Presidency, provided a personal experience. He told of purchasing a rundown farm in Canada many years ago. As he went about cleaning up and repairing his property, he came across a currant bush that had grown over six feet (1.8 m) high and was yielding no berries, so he pruned it back drastically, leaving only small stumps. Then he saw a drop like a tear on the top of each of these little stumps, as if the currant bush were crying, and thought he heard it say:

“How could you do this to me? I was making such wonderful growth. … And now you have cut me down. Every plant in the garden will look down on me. … How could you do this to me? I thought you were the gardener here.”

President Brown replied, “Look, little currant bush, I am the gardener here, and I know what I want you to be. I didn’t intend you to be a fruit tree or a shade tree. I want you to be a currant bush, and someday, little currant bush, when you are laden with fruit, you are going to say, ‘Thank you, Mr. Gardener, for loving me enough to cut me down.’”

Years later, President Brown was a field officer in the Canadian Army serving in England. When a superior officer became a battle casualty, President Brown was in line to be promoted to general, and he was summoned to London. But even though he was fully qualified for the promotion, it was denied him because he was a Mormon. The commanding general said in essence, “You deserve the appointment, but I cannot give it to you.” What President Brown had spent 10 years hoping, praying, and preparing for slipped through his fingers in that moment because of blatant discrimination. Continuing his story, President Brown remembered:

“I got on the train and started back … with a broken heart, with bitterness in my soul. … When I got to my tent, … I threw my cap on the cot. I clenched my fists, and I shook them at heaven. I said, ‘How could you do this to me, God? I have done everything I could do to measure up. There is nothing that I could have done—that I should have done—that I haven’t done. How could you do this to me?’ I was as bitter as gall.

“And then I heard a voice, and I recognized the tone of this voice. It was my own voice, and the voice said, ‘I am the gardener here. I know what I want you to do.’ The bitterness went out of my soul, and I fell on my knees by the cot to ask forgiveness for my ungratefulness. …

“… And now, almost 50 years later, I look up to [God] and say, ‘Thank you, Mr. Gardener, for cutting me down, for loving me enough to hurt me.’

I hope some day to be able to understand more of the reasoning, so that I can say, "Thank you, Mr. Gardener, for loving me enough to cut me down." I had been feeling really ungrateful, especially after finding out about how useless the last round was for us, but I am so, so grateful that other parents like me won't have to do what we did. We all know going into this, especially when we participate in clinical trials, that our children are the guinea pigs for the next cancer generation and that our numbers, responses, and outcomes will help increase the statistical significance of some study, somewhere that will help tweak the treatments to be more effective and less caustic. I can't imagine the sacrifice of parents in the 50s whose children were experimented on (without parental consent) for our benefit.

This morning I just learned that one of our bone marrow transplant friends (not on the sidebar) has a cancerous tumor on her arm. Haven't heard yet whether this is a secondary or a relapse AML, but they're going in for a bone marrow aspirate today to see if there's any disease in the marrow. They say that she'll have to go through transplant again. I love and admire these people who were inpatient when we were and am still reeling from the news. Please keep them in your prayers.