On the Other Side of the Diagnosis

After reading the post about my lectures at the University of Guam, a few people have asked me, "What did you read from your book that made the students and faculty cry?" Here is the piece. Truth be told I didn't read it. Someone asked me what was the most personal piece I'd written, and if I would read it. I can never read this piece out loud, so the professor asked one of the students to read it. It's hard to believe that this all happened only a year ago.

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Thoughts of a Father

Have you ever wondered what it would be like to wait for a diagnosis of cancer? I now know. Here are my thoughts from the first day this began last week. I think he’ll be okay.

~

My son has a 6.5 centimeter lymph node on his neck. Ultrasound shows an 11.4 centimeter spleen – huge, upper limit of normal for an adult, much less for a six-year-old child. Blood work mostly normal, no clear diagnosis, mono test results two weeks away. Thus the recommendation to biopsy. Look for cancer – lymphoma, Hodgkin’s disease, childhood death.

I held him as he screamed yesterday, the needle entering his vein, and I thought, “I hope and pray this is not the beginning.” My sweet six-year-old child, so full of life and joy and determination and creativity and enthusiasm and lost in his plans to move up from kindergarten to the elementary classroom.

We’d take him to MD Anderson or Sloan-Kettering or wherever could give him the chance for cure. Should he be taken from us, such emptiness would be left all my days. For his sister, her life a dance with his, she just two years older, a gaping emptiness. And every day I would talk to his soul beyond, and ask for his intercession on behalf of his father, for strength and patience to make it without him.

I can imagine all this, but in my heart, it has to just be an exuberant immune response to mono, right? Please? How can my child have cancer? Diverse genetic mix, mostly vegetarian diet, clear island air, no carcinogens. It’s just not possible. I try to cut a deal with God: Save my son, let this all be a lump of nothing, make it all smaller, and I promise I will be good. In however many ways that I’m not, I’ll be good.

All my personal concerns, various worries, evaporate under the heat of this lump.

I saw my friend of long ago last year at the Hawaiian Eye Conference. “How many kids do you have,” I asked. “Two,” he responded, “a twelve-year-old and a ten-year-old.” “I thought you had twins.” “We did. One died two years ago. Lymphoma.” He talked of how this trip to the conference was the first he and his wife had been able to take. There was no time to mourn two years ago. “What can you do?” he said. “You’ve got these other kids that are alive and who need you. They need your love, your presence, your joy and enthusiasm for them. So you bury one child and try to keep moving forward.”

The universe and God I do not understand. Suffering and the suffering of the innocent, I do not understand. And at times like this, I don’t try to understand, fearing my explanation

or theory may just be false placation. It’s just the way it is, and there is nothing I can do about it. Will my magical thinking help? Will the universe still respond with “your wish is my command”? Is my son any more important, just because he is mine? Thousands of despondent parents bury their children every day – death by lymphoma, or leukemia, or tuberculosis, or starvation, or war, or murder. And the world just keeps going on. I just keep going on, thinking about me, my concerns, my pursuits, my hopes, oblivious of their pain and the fragments of their broken hearts. Why would I be so special as to receive my request from the universe, from God? I feel reticent even to ask.

Over the last few years when death would come up in conversations (your great-great grandmother died, Duke died, the cat died), Arman has so often said, “I’m scared to die, I don’t want to die alone, can you die with me, Dad?” We realized he thinks that the next world is in the ground, somehow related to the grave. “How will we be able to see each other if we get buried in different holes?”

For most of the day, I’m just doing something else. I look up from my work, and wonder what it was that was causing my anxiety? Briefly forgotten. And the knowledge rushes in, pushes the fragile calm out, my tears well up, and I sob.

(Published in World Peace, a Blind Wife, and Gecko Tails, by David Khorram, MD)

My Alma Mater

I just received the alumni magazine from Northwestern University, where I did my undergraduate degree, as well as my ophthalmology training. I miss it. I miss the vibrant nature of a center of higher learning. I miss the opportunity to hear people that are on the cutting edge of their fields. I miss learning about new ideas. Well, maybe. I just remembered that a few months ago I went to a presentation by the Humanities Council by an academic archaeologist about the clay pots of the Mariana Islands. After about five minutes, I realized I had learned all I really needed to know about clay pots. The rest of the lecture was painful. The speaker was great, mind you. But the topic wasn't, shall we say, "captivating" to me. I suppose if I were at the University setting, I'd choose my lectures more carefully, (just as I now do with the Humanities Council lectures).

When I started my undergraduate career, I had visions of becoming a biomedical engineer, and I started out in the college of engineering. After the first year, I decided there was more to life than circuits and molecules, so I took a hard swing, transfered to the College of Arts and Sciences, and double majored in comparative religion and biology. The current issue of Northwestern magazine has a fascinating article about one of the folks who didn't transfer out of biomedical engineering, but who has gone on to develop what is now, the world's first artificial limb that is controlled by the brain. Nerves from the brain send signals to electrodes in the artificial arm, so when you think, "I'm going to bend my arm", the artificial arm bends. How cool is that! The full article is here. Check it out. It's a fascinating read.

Floating Hotel

A couple of weeks ago, Arman asked me if a hotel could float. We talked about cruise ships, but he couldn't really picture it. This was anchored off the Kona coast. This is a cruise ship, Arman.

Smiley Eels and Boonie Dogs

Here is my column from today's Saipan Tribune.

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Our family of six stopped by the drive-thru window of a local fast food restaurant because no one wanted to cook. Our oldest son, Arman, who is six, had recently taken a liking to the Smiley Meal. He didn’t really like the food, but he really liked the toy, which is why, I suppose, it’s there in the first place.

We pulled up to the little speaker. “Hello, welcome to Fast Food, may I take your order?”. I’m guessing that’s what she said. You know how those drive-thru speakers can be sometimes – pretty crackly. “Yes, I’ll have a blah, two blahs, one blah, and one Smiley Meal.” “May I repeat your order, sir? That’s one blah, two blahs, a blah, and one Smiley Eel.”

Hmmmmm. I’m pretty sure I said “Smiley Meal” and she probably heard “Smiley Meal” and she may have even meant to say “Smiley Meal”, and it may have just been the speaker crackling, but I’m sure she said “Smiley Eel.” Here on the tropical island of Saipan, it would be quite possible to get a Smiley Eel at the local Fast Food place.

The scene flashes across my mind: Arman gets the Smiley Meal box. Everyone is opening their food. He sticks his hand into the box without looking and this smiling slithering sopping wet three feet long eel latches onto his wrist with two hundred tiny razor teeth. He screams! Everyone screams. Food flies! The eel won’t let go! Arman is flailing his arm and the eel is swinging like a fat whip, smacking the other kids as they try to duck. Blood is spurting from Arman’s wrist, splattering the inside of the windows. This is the scene that I imagine, in that split second. Parents are programmed to imagine worst-case scenarios in an instant, as part of an evolutionary mechanism to ensure the survival of the species while simultaneously keeping parents on the edge of insanity. I stare at the speaker and hear. “Sir, will that be all?”

I’m weighing my options. I mean, I really don’t want to end up with a Smiley Eel instead of a Smiley Meal. I’d better clarify things, don’t you think? Well, I break with long-standing character flaws and put my trust in the forces of the universe. “Yes, that will be all.” “Thank-you, next window please.” I pull up with a sense of doom.

She passes the food though the window. The kids are eager. I (while still completely trusting in the forces of the universe, mind you), peek inside the Smiley Meal box. No eel. Whadya know. Silly me.

I pass everything back, shaking my head and chuckling at myself for my ridiculous imaginings. Arman gets his meal, thrusts his hand inside the box, pulls it out screaming! Food flies. Everyone is screaming. It’s minivan pandemonium! “What in Ray Kroc is going on?!,” I wonder, “I checked the box. I swear I did!”

Tears are running down Arman’s face as he clutches something in his small hand. “This isn’t a toy!,” he screams. “Look at this! This isn’t a toy!” (Okay. This here is a little note for Arman’s future college application reviewer or employer or fiancé or whoever decides to google Arman and comes across this column. I’m exaggerating, okay? Arman would never ever respond like this in real life. He’s a great guy and emotionally solid. I’m using artistic license here. Plus, he’s only six.)

I stare at the toy, as do all my other kids, and we agree with Arman’s sentiments: What in the H-E-double-toothpicks is THAT? It’s a sort of demented looking Sponge Bob pin-cushion thing-a-ma-bob. Not much you can do with it, except look at it (which isn’t easy) and throw it away.

Which brings me to my point (yes, there is one). What are they thinking up there at worldwide Fast Food corporate headquarters? These toys last 30 seconds, fill the dump with unnecessary mass, end up in the ocean, or worse, my sock drawer, and have little redeeming value beyond the sale. A toy like this just isn’t very satisfying.

Here is what I propose (and I speak on behalf of all parents). Instead of adding these cheap little toys to the meal, throw in something that will last. Something that will bring joy. Something that will love you back. Throw in a puppy. A cute warm, fuzzy, adorable puppy. (Or even, say, a live chicken.) Now that would be something to cheer about; something to live with and grow with; a pet! And here on Saipan, it would help address both the solid waste problem (by eliminating the disposable 30 second toy) and the stray dog (and chicken) issue. Run a joint promotion with PAWS. Include a Boonie Dog with every Fast Food meal. “Would you like a mangy Wiener dog with your Big Deal Fish Meal, Ma’am?” Now we’re talkin’! “Sir, can we Super-Size that to a Boonie-with-a-Tumor for you?” Yeah, buddy!

Sure, it’ll take a little extra training to figure out how to safely pass the critters through the take-out-window, across the gap, and into the car window (probably tail-first), but it’ll be worth it. We face a multiplicity of serious issues on our islands, and this is one solution that can definitively address several of our mounting problems simultaneously. The landfill wins, the stray dogs (and chickens) win, the children win, the whole island wins! This is a real solution to a real problem. Let’s generate some discussion on this. Do you think a Boonie Dog offer with every Fast Food Meal with help eradicate the CNMI’s stray dog problem, while simultaneously decreasing solid waste? Click on “Comments” and fire away.

Arman Makes the Front Page

We attended a birthday party at the Fiesta on Sunday, and the photographer captured Arman in a happy action shot. That's him on the right on the front page of today's Saipan Tribune.

The caption reads:

"KID's CLUB: Kids beat the summer heat frolicking on the brand new multi-faceted Kid's Pool of the Fiesta Resort & Spa Saipan Kid's CLub during its opening Sunday afternoon. The pool also features slides and fountains for every kid's enjoyment."

I will add that this is a great pool for small kids. It's only about a foot deep, maybe a little more, so our 2 year old son was able to play all afternoon without fear of getting dunked. There aren't any 1000 gallon buckets that get dumped every few minutes, just gentle sprays of water. Hopefully, the Fiesta will put a shade structure over the pool, much like PIC's.

That's Kian standing at the foot of the slide.

Footnote

There's nothing like having a psychiatrist watch your every move. I got this email this morning from my friend James, who's apparently been following events of the past week very closely. James and I had a blast together for four years in medical school. He went on to train in both Internal Medicine and Psychiatry at Mayo clinic. He sent me an email to let me know I drove him crazy by how calm I was through the whole thing, and that I did good. Thanks, James.

I think we're done

I just got off the phone with my dad, the original "Dr. Khorram." He says to leave Arman alone. (Now I know where I get that line of thinking from). No need to go trying to find if he really only has one kidney or not. He'll live a normal life whether he has one kidney or two.

I have no idea why my Dad is holding a dozen yellow roses in this picture, even though I took it, right here in Saipan.

Now What?!

I took Arman in for the ultrasound this afternoon. The spleen is smaller, down from 11.4 cm to 9.0 cm. That's on the upper limit of normal for a six year-old's spleen, but it's not surprising given that his lymph nodes are still not quite normal size either. But it's all heading in the right direction, and as far as I'm concerned we're done, unless anything enlarges again.

Now, here is the problem with medical testing. Sometimes you find something you're not looking for. While Ryan, the ultrasound technician, is looking at the spleen, he notices there isn't a kidney on the left side. Huh? Only one kidney? Yeah. He sweeps the ultrasound probe all over Arman's abdomen, and the kidney on the right is crystal clear, but there just isn't one on the left. This happens. Sometimes people are born with only one kidney. The other one just kicks in and picks up the slack. People live perfectly happy lives, ignorant until their autopsy, that they have only one kidney.

Yet I'm standing there getting that "parent panic" thing revved up. One kidney. No spare. Anything that damages that kidney, and Arman dies. A car accident, a bullet, whatever, and he's dead. (Not really, but we're not talking logical thought here.) Then I realize, well, he only has one liver too. And only one spleen. And only one heart. And in fact, only one brain, which is a pretty important organ. No built in spare for any of those. I think he'll be fine with one kidney.

Ryan suggests that a CT scan would be needed to definitively see if the kidney is there or not. But I wonder, "Will we do anything differently depending on the result of the CT scan? Will we change anything about the way we raise him, or the activities he engages in if he only has one kidney, instead of two?" As I'm pondering all this, I realize that I've never had any abdominal imaging done on myself, so it's possible I only have one kidney too. Ryan offers to put the ultrasound probe on my belly and check. No thanks. I don't need to know, unless I need to know, and I don't think I need to know.

I'll talk to my dad, who's a pediatrician, about Arman and his one kidney.

The Benevolence of the Universe

Arman continues to improve, with the lumps on his neck decreasing in size. That's very reassuring, and I'm 98% sure that there is no further cause for concern. The 2% uncertainty is there just for superstitious reasons -- you never want to say you're 100% sure. I didn't get a chance to get him in for his spleen ultrasound this afternoon because of things going on with the other kids, but tomorrow I'll take him in, mostly for reassurance.

I've been thinking of the distress I went through this week, and all the support from this great community. It's been amazing.

I've always been a skeptical sort of person, and I've been working on being more receptive to the benevolence of the universe, the absence of coincidence. A year ago, I would have probably concluded, "See, it was only a virus. All this worry was for nothing." But now, I really do feel that in the beginning it was bad. That lump was so big, and so hard, and there is still no explanation for it. And it's somehow melting away, contrary to all reason. I'm chalking up the return of the life of my son to the benevolence of the universe. All of you had something to do with that. Thank-you.

Lymph nodes, personality and the practice of medicine

Well, the mono test came back showing that Arman has been exposed to the mononucleosis virus (which is officially called the Epstein-Barr virus - EBV) at some time in the past, but not recently. There are different antibodies in the blood that can be measured. They measure antibodies to a molecule (or "antigen") at the core of the virus. The viral molecule is called the "virus core antigen" or "VCA". We produce different types of antibodies in response to an infection. The first one our body produces is immunoglobulin G, or IgG for short. In the graph above (don't get thrown off by the labels -- apparently French people have the same stuff in their blood as everyone else) you can see that IgG to the viral core antigen (the red line) rises and stays elevated. The IgG stays high for years and years, so if you have a positive IgG, you've been exposed to the virus at some point. IgM, on the other hand, rises during the acute infection and then goes away after a few weeks (the purple line). Arman's IgG VCA is elevated indicating past exposure to EBV, but the IgM is not elevated, indicating that he does not now (or anytime recently) have an EBV infection. Conclusion: They enlarged lymph node is probably not from mono. I say "probably" because sometimes, the IgM may not rise even in an acute infection. Go figure.

Being on the receiving end of the practice of medicine, I'm learning quickly that so much of the care that you receive as a patient depends upon the personality of the doctor, not on their knowledge. After seeing these results, the pediatrician recommended biopsying the node and discussing things with the pediatric oncologist in San Diego. I said, "With the node getting smaller, why would we biopsy it? After all, any of the bad things would not get smaller." The main question in my mind is, will a biopsy change the course of action at all? We already know it's not cancer. It's getting smaller. What could a biopsy show that would affect what we do? Answer: nothing really, but we don't want to miss anything.

That approach is one made on the basis of personality -- the need to not miss anything no matter how remote the probability. The pediatrician recommended that I at least come in and let the ENT specialist see Arman and make his recommendation. "Sure, I'm happy to do that." "Why don't you talk to him, he's standing right here next to me." He gets on the phone and asks me, "Is the mass getting smaller?" "Yes, definitely." "Then we don't need to do anything," he says. "Do you want to check Arman?" "No, just let me know if it gets bigger." "No biopsy?" "No, why would we biopsy something that's getting smaller?" His response also is based upon his personality. He doesn't need to have it proven to him that it's benign. His approach is pragmatic, like mine.

In medicine, many times (maybe even most times) there isn't a clear answer on the approach to take. The approach is based upon personality. In my practice, I do my best to let the personality of the patient make the decisions regarding the approach. When to start glaucoma medications for someone who has certain risk factors for glaucoma, but who has not yet developed glaucoma is one of these common situations. I'll often say, "What we do at this point, really depends on the type of person you are. Do you want to start this medication and use it for your lifetime, knowing that you may not need it, but that it will reduce your chances of developing any visual damage? Or are you the sort of person who would rather monitor things closely and see if any damage occurs, and then start the medicine once we are sure you need it?" Some people would rather take medicine and not worry about developing damage. Other people would rather wait to see definite indication that they need treatment. In my opinion, what I as the doctor feel (because in such situations, it is about what one feels, not what one thinks), isn't very important. I'll share it if asked, but I'll say, "This is what I would do because of the type of person I am. It might not be the best approach for you if you're a different type of person."

Of course, in lots of situations, the answer is clear, and I'll lay down the law and say, "if you don't stop smoking, you will go blind. You must stop smoking." That's the science. That part is clear. Doctors sometimes get confused because they lose the science in the midst of their approach, which is personal. That's why it can be so confusing to patients. Every doctor seems to have a different opinion of the best course of action. The important thing in my mind is to discover the best approach for the patient, based upon their personality. I teach them the science, and help them find their path.

So anyway, Arman's enlarged lymph node and spleen probably were not due to mono. And also, probably not due to lymphoma or anything bad. The lymph node is getting smaller. I was going to take him in for an ultrasound of his spleen to make sure that's getting smaller too, but I had forgotten that it was an "austerity Friday." Our government is broke here, so every two weeks all government employees get an unpaid holiday as a cost cutting measure. The ultrasound tech was on "austerity leave", so we couldn't get the ultrasound. I'll take Arman in next week, just to double check the size of his spleen.

Thank-you, Angie

I've never met Angie Jordan. I stumbled upon her blog one day by clicking on "Next Blog" up there at the top of this page. She's a very talented cartoonist and artist in Philadelphia, and we linked our blogs. I visited her site today and saw this, which touched my family deeply.

For you, Arman

"I worked on a rendering of Arman last night to hopefully brighten his spirits, along with his family, in hopes he can recover, very soon, from a serious health concern.

"Best wishes Arman!"

It's people like Angie that make this a great world to live in.

There is nothing new to report. We're still awaiting mono test results, but he's really looking and acting healthy. He was invited to be in a segment for a "healthy cooking" TV show, and apparently was a real chatterbox in the studio today, telling everyone about how we don't have TV (so he won't be able to watch the show), and about how important it is to eat healthy food, and how his mom really likes vegetables.

If the mono test results are not back by tomorrow, I'll probably take him in for an ultrasound to see if his spleen is getting smaller. If it is, I think we're out of the woods.

A good sign

I was in Guam over the weekend. I went over on Thursday, and spent Friday morning at Island Eye Center with Dr. Margie DeBenedictus. She's an expert at blepharoplasties (cosmetic lid lifts) and I'm an expert at an advanced type of cataract surgery (phaco chop), so we spent the morning teaching and learning in the operating room. The rest of the weekend I was at the National Convention of the Bahai's of the Mariana Islands.

When I got back, I looked at Arman, and not having seen him for a few days, I'm pretty sure that the lumps have gotten smaller. A few other people who hadn't seen him over the weekend said the same thing. I'm hoping it's not just our wishful thinking that helps us see a smaller lump. But I don't think so. I think it really is smaller. Smaller would be a very good sign.

From Uncle Hoo

Here is an email I received this morning from my uncle in California. I had forgotten that when I was Arman's age, I went through a big evaluation for leukemia.

We have been following the up-dates and the reports. Our prayers are with you and your family. I understand your pain and concern as any parents should have.

I have two sons with asthma and peanut allergy, which both are deadly in a matter of minutes. It has been 15 years and not a day goes by that I am not thinking of this and wondering what is going to happen today or tomorrow.

When you where a kid at the same age, you had nose bleeds all the time... your parents went through hell to figure out why. And your dad is a pediatrician.

Take your time, don't rush and consult with others and then make a decision. Because as a parent the decisions we make, shape their future.

Thank you for letting us know and if there is anything we can do to help, please let us know. In meantime you should take it easy and with this prayers you will concur.

Love, Dai

O God, refresh and gladden my spirit, purify my heart, illumine my powers. I lay all my affairs in thy hand. Thou art my Guide and my refuge. I will on longer be sorrowful and grieved, I will be a happy and joyful being. O God, I will no longer be full of anxiety, nor will I let trouble harass me. I will not dwell on the unpleasant things of life.

O God, Thou art more friend to me than myself, I dedicate myself to Thee, O Lord.

Introducing... Uric Acid

Thank-you to all of you who’ve shared your concerns and prayers both through the comments and by email. Your support has helped calm our spirits.

Here’s where things are now. The most common cause of swollen lymph nodes in a kid is “mono” – a viral infection. The problem is, with Arman, there is enough that is not consistent with mono that the doctors were immediately concerned. The spleen can get big in mono, but Arman’s spleen is huge, which is not typical. Mono usually comes with a fever, which Arman has not had. And, no sore throat. His white blood cells don’t show signs of an infection either. So, the concern about lymphoma. Luckily, not everything is consistent with lymphoma either. Foremost, he hasn’t been experiencing weight loss, weakness, fatigue, or any of the other constitutional signs of cancers. He’s a pretty active healthy-looking six year old boy with an unexplained enlargement of his lymph nodes and spleen.

So, last week we drew blood to test for mono. The problem is, because we live on a remote island in the Pacific, there are no facilities here to perform a mono test. The blood has to be sent to Hawaii. It will take a week or so for the results.

Some of the doctors have felt that because it’s not typical for mono, we should quickly remove the lymph node, and send it for analysis. The problem: it would be a big operation, splaying Arman’s neck open. The danger in waiting: if it is lymphoma, it could grow quickly and cause severe problems.

My thinking has been that since it hasn’t grown over the past week, we should be okay to wait for the results of the mono tests. If they’re positive, then we have a diagnosis. We can relax and just wait for the mono to get better. We're off this hellish ride. If the mono tests are negative, then we can go ahead with the biopsy.

So, the pediatric oncologist in San Diego (with whom Arman’s doctors at CHC have been consulting via telephone) recommended getting a test for uric acid. Uric acid comes from the breakdown of cells. If there is a large tumor, or a rapidly expanding one (what’s called "large tumor load") then the uric acid will be high. If the uric acid is high, then the likelihood of mono is low, and we need to move immediately to biopsy. If the uric acid is normal, then there isn’t a large tumor load (even though there may still be a tumor). In that case, we can wait for the mono test results instead of moving urgently to biopsy. The uric acid test was run here on Saipan, and the level was normal. So, if there is tumor, it’s not rapidly expanding. So we're safe to put off the biopsy for now and wait for the mono test results. Our hopes are high.

The mono test results should be back by Friday. Right now, it’s just a matter of waiting.

In the meantime, the great thing about Arman is his general obliviousness to all of this. He’s unaware of our concerns and worries. He’s happy playing. He feels fine. He knows that he’s got a lump on his neck and that we’re trying to figure out what it is, but from his perspective, it’s just another minor annoyance like an ear infection. What a great perspective to have in the midst of all of this.

Thoughts of a father

Arman with a 6.5 cm lymph node, now ultrasound shows an 11.4 cm spleen, huge, upper limit of normal for an adult, much less for a six year old, blood work mostly normal, no clear diagnosis, mono test results two weeks away.

Thus the recommendation to biopsy. Look for cancer – lymphoma, Hodgkin’s disease, childhood death.

I held Arman as he screamed yesterday, the needle entering his vein, and I thought, “I hope and pray this is not the beginning.” My sweet six year-old child, so full of life and joy and determination and creativity and enthusiasm and lost in his plans to go up to the elementary.

We’d move the family of course, to MD Anderson or Sloan-Kettering or wherever could give him the chance for cure.

And should he be taken from us, such an emptiness would be left all my days. For Nava, her life a dance with his, she just two years older, a gaping emptiness. And every day I would talk to his soul beyond, and ask for his intercession on behalf of his father, for strength and patience to make it without him.

I can imagine all this, but in my heart, it has to just be an exuberant immune response to mono, right? Please? How can Arman have cancer?! Diverse genetic mix, mostly vegetarian diet, clear island air, no carcinogens. It’s just not possible.

And I try to cut a deal with God. The bargaining -- one of the five stages of grieving (I recognize it from my medical school days). Save my son, let this all be a lump of nothing, make it all smaller, and I promise I will be good. In however many ways that I’m not, I’ll be good.

All my personal concerns, various worries, evaporate under the heat of this lump.

I saw my friend Robert, from residency, last year in Hawaii at the eye conference. “How many kids to you have now,” I asked. “Two,” he responded, “a 12 year-old and a 10 year-old.” “I thought you had twins.” “We did. One died two years ago. Lymphoma.” He talked of how this trip now was the first he and his wife had been able to take. There was no time to mourn two years ago. “What can you do,” he said. “You’ve got these other kids that are alive and who need you. They need your love, your presence, your joy and enthusiasm for them. So you bury one child and try to keep moving forward.”

The universe and God I do not understand. Suffering and the suffering of the innocent, I do not understand. And at times like this, I don’t try to understand, fearing my explanation or theory may just be false placation. It’s just the way it is, and there is nothing I can do about it. Will my magical thinking help? Will the universe still respond with “your wish is my command”? Is my son any more important, just because he is mine? Thousands of despondent parents bury their children every day, death by lymphoma, or leukemia, or tuberculosis, or starvation or war or murder. And the world just keeps going on. I just keep going on, thinking about me, my concerns, my pursuits, my hopes, oblivious of their pain and the fragments of their broken hearts. Why would I be so special to receive my special request from the universe, from God? I feel reticent even to ask.

Over the last few year when death would come up in conversations (your great-great grandmother died, Duke died, the cat died), Arman has so often said, “I’m scared to die, I don't want to die alone, can you die with me, Dad?” We realized he thinks that the next world is in the ground, somehow related to the grave. “We’ll all see each other in the next world, Arman.” “But what if we get buried in different holes?”

For most of the day, I’m just doing something else. And I look up from my work, and wonder what it was that was causing my anxiety? Briefly forgotten. And the knowledge quickly rushes in, pushes the fragile calm out, my tears well up and I sob.

Arman

It’s amazing how your perspective on life can change in just 24 hours.

Our six year-old son, Arman has had a lump the size of an egg on his neck for about a week. We took him to the hospital yesterday. He saw two pediatricians and an ENT specialist, all of whom are very worried. He had some blood tests, and an ultrasound which showed a very enlarged spleen, which is not good. We went in for more tests this morning, and his doctors have been in touch with pediatric hematologist-oncologists in Hawaii and San Diego, who recommend some more tests, which we'll get this afternoon. Arman may need surery to biopsy of the lymph node in his neck if the tests are not reassuring.

The best case scenario is a very unusual manifestation of a common infection like “mono.” The worst case scenario is, well, the worst case scenario. It will be at least a week before we know anything. Please keep Arman in your thoughts and prayers.