Monday, December 15, 2008

Confession

I wish I could always claim altruism when taking care of dying patients. But the truth is, there are times other priorities in my life try to stake a claim in my work.

This happened last week at work. I had met with a lovely family to discuss our plan for their loved one who was on a ventilator, not responding, and likely permanently stuck like this.  He'd had the most aggressive care possible, but it seemed brain damage was irreversible. In the family meeting they told stories of his great accomplishments and were very clear that living a life on a vent with artificial nutrition through a feeding tube in his stomach, in a nursing home somewhere, was not something he would have wanted.

The decision was made then to withdraw the aggressive measures in place. We'd remove the ventilator and antibiotics and support him as his body transitioned to a dying process. We always warn families the process is unpredictable in terms of time frame. He may live minutes or days, something I wouldn't really know until he was off machines.

It was a very peaceful process. The family was all in the room. We removed the breathing tube. Took off all the other tubes and wires, beeps and buzzes, and let them just be with him.  It was evident he'd been very sick, because he really made no effort to breath on his own. I prepared the family it would be more in the minutes range and left them to be with him.

Sometimes the monitors out in the nurses station still record the electrical telemetry from the heat. I'm not as used to this, as usually everything is turned off, but in this case I could look at a little computer monitor to see his heart still beating.

Here's the confession. With my husband out of town this month, I'm the one to pick up our daughter from daycare. I'd already stayed in the hospital longer than I usually do, and was keenly aware as I watched the blip of this mans heart, that each blip was time getting later and later. As it began to get slower and slower, I found myself mentally coaxing the heart to stop. "'c'mon, let that be the last beat. I've got to go!"

I know, how callous! When I realized what I was doing I was immediately disappointed in myself. This bleep on the screen signified a person's life...by hoping it would stop soon, I was essentially wishing this man dead.  Not for some noble reason, like to end his suffering, but so that I could pick up my daughter on time from day care. 

That's my confession. And my apology to this man's soul, who's heart did stop. And to his family, who weeped at his bedside and hugged me in gratitude for helping him die peacefully, not realizing my hidden selfishness. 


Monday, December 8, 2008

Toddlers at work

I lead a lot of family meetings for my job. This week, I felt like I was mediating a bunch of toddlers at one such meeting. The sad thing is the fighting had little to do with the actual health of my patient.

The background: Mr Jones, 60's, came into the hospital with bad emphysema. The woman with him identified herself as his wife. She then became the primary contact for decisions as he got sicker. "Shall we do this surgery Mrs Jones?" and she directed the doctors on what he'd want. It got to a point that he was on the ventilator and required neurosurgery for extra fluid on his brain. At this time, she decided to call the rest of the family who lives out of town to tell them their loved one was in the ICU and critical.

Chaos ensued. A son flew into town. Two sisters drove in. All entering the ICU with steam whistling through their ears. The family was angry. There was no "Mrs. Jones", they said. This woman had been married to the patient 20 years before for only 4 months. After a restraining order and a loss of a great deal of money they divorced. She arrived at his door a few months ago, needing a place to live, with a certificate showing she was a licensed caregiver, which the patient needed. So she moved in with him.

It was in the fireworks of these two parties meeting that we were asked to intervene. The good news was that the patient was doing better, and able to get off the vent, so I could speak directly to him about his medical decisions. He could also designate who he wanted to be his decision maker in case he got ill again.

The family and ex wife still needed some help and as I met with them, I realized that true issue was not the patient and his wishes but the house he was living in. He was renting it from his out of town sisters. When they arrived in town they found the ex-wife had changed the locks and barred them ,with police force, from entering.  I guess because the patient was renting it, he had to give permission for the "landlords" (his family) to enter, and being on the vent his "wife" had that power.

Sadly for this fake wife, as the patient awoke, he was able to give that permission to his family, and her scheming began to crumble. As she began to realize the situation she emotionally started to unravel, pleading with the patient, newly off the vent and still in the ICU, to change his mind. She hysterically begged me to convince him otherwise as she'd soon be homeless. The family, not helping the situation, antagonized the woman, with threats of calling the police.

I tried, in vain, to help them talk as adults, but as they bickered and threw insults and waved different legal documents in front of each other, I began to see them as two-year-olds struggling to both play with the same toy.  My reasoning doesn't help with my own two-year-old, so why would it help now.  Like with toddlers I finally said, "Enough! Time for both parties to leave. Your fighting is hindering our care of the patient."  They did need a bit more coaxing from the hospital security before they finally left.

It's interesting what brings out the worst in people. In this case it was a house. Never mind our sweet patient who almost died, who will need good care at home once he leaves the hospital, and who emotionally is sickened to find that someone he really loved was trying once again to swindle him


Saturday, November 22, 2008

Jabba the Hutt

One of my favorite lecture series all year is the "mystery and awe in medicine" talk. Very informally we sit around telling stories about the things we daily encounter that we can't explain.

It is very common for people to see deceased relatives in the last hours and days of life. Usually a comfort to families and patients it is unknown what this phenomenon is.  Some say it has to do with cultural expectations, and that it's natural for someone close to death to talk about their mother or someone who has gone on.  Could it be possible that someone is actually there? How would we prove it?

One of our great social workers told the story of Eddy. He was young and at our house dying of cancer. The day before he died he began to tell others that he'd been visited by his deceased grandmother in the company of a stranger.  He told our social worker, "It was great to see my grandmother, but that other one was a bit scary. I don't know who grannie was with, but it looked almost like Jabba the Hutt". 

This surely would point to the theory that these visions are delusional; made up dreams in our minds. And this is precisely what our social worker thought as she kindly listened to him tell again about his "visitors". 

The next day Eddy was unconscious and no longer able to communicate. Eddy's mom sat by his side when our social worker visited. Eddy's mom had missed the stories of the day before, and our social worker gently retold Eddy's vision, including this account of "jabba the hutt".  Instead of chuckling or smiling as our social worker expected, her face turned white and her mouth dropped.

"I don't believe it" she gasped. She went on to tell our social worker that Eddy's grandmother had a dear sister who died years before Eddy was born.  The two older woman had been inseparable. This great aunt of Eddy's always struck people for her overweight, bald-headed, eyes larger than life look about her. Though she'd never considered it before, she looked exactly like Jabba the Hutt.

Eddy then was seeing someone he'd never met, not even seen pictures of, and absolutely didn't recognize.  Now explain that one


Wednesday, October 15, 2008

Gum Drops

Every day she has bowls of candy in her room at the hospice place. There is always one filled with gum drops, but today there was one with pumpkin candies too. She's not the typical hospice patient, although she came to us 2 months ago appearing to be on death's door, she clearly is not. She's in her 80's, uses a walker to get around, but looks like she's got at least another 6 months to go. 

She offers me a gum drop and then says, "I'm trying to cut back, limiting myself to just 3 gumdrops a day. One in the morning, one at lunch and one before bed, 4 a day was just too much"  She is very serious but it's hard not to smile.  "How did you know 4 was too much?" I ask. "Well" she hesitates "it was the noises my body was making, and someone told me once the noise was from eating too much sugar."  I certainly wasn't going to challenge her logic.  "You know" she continues, "When I first got here, I really let myself go, eating a couple gumdrops at a time...I should have known better.  Life is good now that I'm down to 3" And with that we move on to talk about other things.

Part of me wants to convince her to let loose, eat what she wants, she's on hospice for goodness sake! But I also recognize her joy in self-restraint. Perhaps it is in limiting herself that she relishes the tiny sugar covered jelly candy all the more?  When I left the room, I took with me her gift of one gum drop.  More as a reminder to me that life's not always about how much more I CAN have, but how much is enough for me.  Maybe just 3 gumdrops a day is enough : )


Monday, September 22, 2008

Christmas in September

Not everything is always a perfect ending. One of our patients this last week is a single mom of 3.  She was diagnosed with cancer last year, having just turned 40 it was very unwelcome news.  The doctors were never able to say where the cancer came from. It was squamous cell, but because it had already spread so far when it was found, it couldn't be called "lung" cancer or "skin" cancer.  What they did know was it was in her bones and brain and abdomen and it couldn't be cured.

As a mom, her one wish has been to make it to Christmas. However, everyone at the "house" knew that wasn't going to be likely. Although she was still getting around, eating meals, the chance of her making it 3 more months seemed impossible. Always trying to be creative, we just decided to have Christmas early.  An email was sent out to all the volunteers and staff on Friday for a call to arms.  There was to be a Christmas tree and lights, presents for all the kids...Christmas music and goodies and even a Santa Claus visiting. 

In just 2 days, the office here at the house began to fill up with food and gifts in anticipation for Monday's Christmas in September celebration.

I was surprised then when I entered the office this morning to find people in tears. In a seemingly unfair turn of events, our patient had died overnight, on our "Christmas Eve". 

What awful timing. All these good intentions by so many caring people, left now to wonder why?  And 3 children who were already dealing with a dying mom, not just wondering, but now screaming, WHY?


Sunday, August 17, 2008

Finger Nails

You really can't take the mom out of anyone. I saw an example of this very clearly this week. We have a woman in her 30's here with cervical cancer. It's been one of the tougher things for me to come in each day and visit with her about her cancer and about her girls. Ellie is 7 and Zoey is 2. There are pictures plastered all over the walls here at the "house". Sometimes in the afternoons, I hear the girls running around in the halls, being admonished by grandparents to keep quiet.


Kindra, my patient, has really been in and out of it, asleep most of the time. Part of this is to escape the hard reality of dying so young. She talked to me earlier this week in one of her more awake times about the girls. "Zoey isn't going to miss me, I mean she'll miss me in the way people miss the idea of things, the idea of a mother, but not really me. It's Ellie I really worry about. I know she'll miss me so much. I worry their dad will take his grief out on them, won't be patient with them." I thought, as I was scrunched on the corner of her bed listening, how unthinkably hard this must be. What must be harder... knowing your child won't remember you or knowing your child will?


After that talk she spent the next several days in a deep sleep, enough to make everyone concerned that she was getting close to dying. That is until today. Suddenly out of a deep coma she arose, sat up and wanted to spend time with her girls. She got up to a wheelchair and was pushed around for a few minutes. And then, like only a mother could do, she wanted to clip her girls fingernails.


There in her wheel chair, pale with dark circles around her eyes she sat, almost skin and bones. Each girl one at a time climbed into her lap so mom could clip those nails and get them clean. Such a little thing, but spoke volumes.


She went back to sleep later, maybe not to awake again. But for a time, she mustered up her strength to take care of unfinished business. Isn't it those little things moms do each day that make them moms? There's not a more symbolic gesture as that...

Friday, August 15, 2008

Bathing

I'm constantly in awe of the little things hospice does to help families cope.

Madame Olga was a true diva. A life long voice teacher, her two daughters' sole purpose in life was to cater to their mother's ego.  Madame Olga was well known and spent her life dedicated to her craft. She was still giving voice lessons at 97, a week before her stroke. It was obvious to the family that any physical impairment, let alone loosing the ability to sing, would be impossible to live with.  She came to the "house" to spend her final days.  Although mostly unresponsive, completely unable to communicate, every time the daughters would play their mother's music, her eyes would open and a tear would fall.

After she passed away, the nurse did what she always does; offered the daughters a chance to help the nurse bathe the body.  Hesitatingly, both daughters consented.

The experience was life changing. They both later told how that symbolic act of cleaning their mother's body, helped both of them let go. The eldest, Gertrude, though in her late 60's had spent her whole life taking care of her mother, to the neglect of her own life. As she bathed the lifeless body before her, she wept and verbally forgave her mother. The bathing ritual was a way to cleanse her own soul of the harbored resentment at the larger-than-life mother who was never good at being "mom".  As both daughters cleaned her wrinkled strong hands, and washed her crooked feet, they were also able to reminisce and say  a final good bye.

Cleaning, bathing and preparing a body after death has been a part of cultures for ages. It is only in our modern death denying culture that we've delegated the task to others. It's refreshing for me to hear that hospice at least offers the option. For some, like the daughters I met, it was one of the most meaningful experiences of their lives. 


Thursday, July 24, 2008

Too much to handle

Sometimes it's better not knowing.

I stumbled across an article in the paper today. What caught my eye was the picture of the 20ish person. "I know that face" I thought.  As I began to skim, reading about the youthful adventures and work life of this person my brain began to make the connection.

A few months prior I'd taken care of a lovely 50ish woman with pancreatic cancer. She'd come to us with intractable vomiting, thought to be partly of an emotional nature. The trend is all to common; someone young , often a parent, who just isn't ready to die is vomiting uncontrollably.   Instead of processing through the reality, the struggle can become symptomatic. In other words, the emotional pain manifests itself in pain or vomiting. 

My patient had reason for emotional struggle.  A mother of 2, one of her kids was killed right before her diagnosis.  The loss of her child in addition to the loss of her health became overwhelming.

While I took care of her I worked with medications to help, but I always felt the fear and resistance to dying. The remaining child was doting, caring and supportive and the bond between the two was extremely close.

I moved on to other places to work, and wasn't around for the mother's death, in fact had forgotten about this young family until I saw the picture in the paper.

What I was reading was an obituary.  An obituary of this young person, the child of my patient. The paper said the cause of death was unknown. But isn't it known?  This poor young one had already had too much loss. Perhaps the prospect of life alone seemed too overwhelming.

I'm shocked still as I write this. I'm used to the process of a body shutting down, through disease or old age.  The sudden snuffing out of life, in the midst of health and potential is depressing. Couldn't something have been done?


Monday, June 30, 2008

Therapeutic Privilege

There is a phrase sometimes used in ethical discussions about patient's rights called "Therapeutic Privilege".  The connotations aren't always positive. In fact, when I hear the word this is what I think of "I (the doctor or family) know more than you, therefore I have the privilege of deciding what you should know or not know" 

This story illustrates the problems with this concept:

Annette is in her 20's. She was diagnosed late in life, at age 13, with a genetic condition that effects her digestion and absorption of food.  Over the years she's gotten to the point that she can only stay alive with nutrition given to her through her veins, called TPN.  This seems like an easy solution, accept anything in our body (like an IV line) over time has a tendency to get infected.  Annette ends up being in our hospital every few months with a bad infection from her TPN line. In fact, she's had so many infections that she is loosing veins that can be used for her nutrition. The line she has in now, is actually the last vein.  If it gets damaged or scarred, there will not be another way to feed her.

When Annette is not in the hospital she lives in a nursing home.  A life of poor nutrition does a lot of things to the body. She has thin bones and cannot walk, she has had many dislocations so it's hard to use her hands, her growth is also stunted.   She has been chronically ill for over a decade, and the psychological ramifications of this have made a definite impact on her social skills, as well as her developmental growth. To me she seems like a 13 year old, ironically the age of her diagnosis. 

This most recent admission to the hospital was again for infection of her TPN line. The one line she has left! Her family struggled with watching her so ill, and wondered if there was anything to do.  Her regular doctor mentioned palliative care, and talked to the family about the options of hospice and comfort measures.  The one big difference is that the doctors, based on the family's wishes, did not include Annette in on this talk.  The family cried and worried about Annette's overall health and decided they wanted to stop the TPN, as a way of ending the never ending cycle of infections/hospital stays/pain, etc.  The problem-  they didn't want any of the doctors to tell Annette... "She wouldn't be able to handle it" they cried, "She'd panic and it would be worse, it's better if she didn't know she was dying"  This then is the concept of Therapeutic Privilege.  We think that the truth (stopping your food) would actually hurt you, therefore we withhold information. 

It did not feel right to me. I pictured Annette getting weaker and weaker without food, wondering why, with doctors and family members in fake smiles reassuring her nothing was wrong. That's not comfort. That's not good medicine.

Needless to say, this is not what we did. Despite the family's wishes we began including Annette in the discussions. We had to be simple, but she could still decide for herself what she wanted.  And ultimately, despite being stuck in bed, in constant pain, with no hope for getting better, she chooses to at least try;  to keep coming back to the hospital, to even wind up on machines if need be, anything to keep her going. 

You can see why therapeutic privilege is a slippery slope. Who decides what information someone can or cannot handle? Had we let the family decide, Annette would not be alive today. Had we even let some of the doctors decide, they'd have looked at her life and thought, "not worth it" and she'd not be alive today.  Luckily, we threw therapeutic privilege out the door, and asked our patient...who is alive today.


Monday, April 28, 2008

Guppy Breathing

There’s a type of breathing when people die called agonal respirations.  The best way to describe this is a deep, regular breathing that often involves movement of the jaw and shoulders.  The jaw movement is what I almost always notice.  If you think of it, normally when we breathe your jaw doesn’t move at all. This forward thrust of the jaw is an ominous sign, and usually means death is minutes to hours away.  Another name for this type of breathing is guppy breathing, named I suppose for the movement fish make when trying to get air out of water. We have pamphlets in all the rooms explaining these things for families,so they can also recognize the signs of the dying process.

All this is background for a funny story.  We had a lady here at the house that was very curious about the dying process. She decided to read the pamphlet too, so she could be prepared for these changes in her body.  That’s understandable, but she went even a step further. The nurse went in her room one morning and found the patient sitting in bed holding a mirror up to her face. She had put on her brightest lipstick, a deep red that was in shocking contrast to her pale skin. There she sat with her cheeks sucked in, making a fish pucker face,moving her lips up and down.  “Mrs.Rose, what are doing there making that face?” the nurse asked in bewilderment. “OH, I’m just practicing” she said matter-of-factly.  “Practicing what?” the nurse wondered.  “Well, this book here talked about guppy breathing as you die, so I thought I should practice it to see how it looked…I want to do it well.”  

The nurse could hardly contain her laughter at this misguided attempt.  If she only knew how different the fish pucker face was from actual agonal breathing…and how strange it would be if that’s the face we all made when we died!


Monday, April 21, 2008

Irish Lament

People express emotions in so many different ways. I've met a very facinating person this week at the house.  He's in his 80's and is the husband of one of our patients.  The two of them had been living at home alone, never having had children. She had been getting jaundiced but neither one of them seemed to notice until a cousin stopped by and called 911. 

She was subsequently diagnosed with cholangiocarcinoma, a type of cancer in the bile duct and given just days to live. That's when she came to the house for her end of life care.

Her husband is the one who impressed me.  What I first took to be dementia, I soon realized was actually misplaced brilliance. He was an electrical and mechanical engineer and worked on the Apollo space missions in the 60's and 70's.  His way of thinking was in a plane so different than mine, that he had a hard time grasping why his wife was dying. 

Everyday I'd see him walking down the hall, hunched over with time, a blue and yellow knit stocking cap on to match his green polyester pants, blue knit sweater and stripped shirt. Never once in the week he was here did he change clothes. And everyday he'd carry his violin, to and fro, having been a concert violinist as well. 

For all that he could do in explaining how valves of her biliary drain worked, and remembering every blood pressure reading she'd had in the course of the week, he lacked in emotionality. I could sense that he loved his wife of 60 years, but never once did he sit by her side to tell her so, never once did he whisper he'd miss her.  It was all numbers and mechanics.

She died today. As peacefully as she could. He had been in the room with her all morning, knowing it was getting close. As she took her last breath he picked up his violin and played "Irish Lament", the music piercing the silence of the room. I realized then, that was how he was saying goodbye.  Unable to put his feelings into words, the music was his way to do it. A few tears dropped as he played, causing all of us in the room to cry.  A brilliant man saying goodbye in the only way he knew how.


Monday, March 10, 2008

Who has the say?

What do you do? 

She’s in her 20’s.  She’s battled sickle cell disease all her life, with a list of hospital stays that would fill a notebook.  In fact, she even had a baby while in the ICU. That’s right, hooked up to a vent, on blood pressure medicines; they did an emergency c-section last year in the unit!  They told her family at that time, they didn’t think she’d make it out of the hospital.

But she did.  She was even able to get off the trach (breathing hole in her neck).  So when she came in this time with pain, and called her sister from the ER in a panic saying, “Tell everyone I love them, I think this is it”, no one really believed her.  She even told her sister whatever happened she wouldn't want to wind up stuck on machines.

But she is.  This time in the hospital she had an arrhythmia and her brain had some time without the proper amount of oxygen. She not only wound up on the ventilator, this time she didn’t wake up.  All the scans and tests show severe brain damage.

We sat down with the family- a confusing mix of people.  A biological mom who gave up custody, a foster parent whom the patient verbally said she wanted making decisions, and 2 sisters who are now raising our patient’s child.  We gave them the bad news about her brain injury.  We let them know the neurologist thinks she has only a 5% chance of getting any better.  We painted the bleak picture of putting in another trach, of placing a feeding tube into her stomach and of moving her to a nursing home for people in vegetative states. 

We reminded them of what she told the sister, about the premonition of dying and not wanting to be stuck on machines.  Still, the family said, proceed with all the things that will keep her stuck. 

What to do.  They are making decisions, but maybe not the decisions the patient wanted them to make.  Yet, who are we to take away that hope they have, that 5% chance of her improving from the blank stare, body rigid, hooked up to machines existence that she’s currently in. 

What to do?


Monday, February 11, 2008

A Challenge

There's just something about feeding and children that is inseparable.  Or maybe it's feeding and motherhood? Regardless  I had a case recently that's been one of my more challenging ones personally.

Max was born with a brain condition that didn't allow him to interact with others.  He was blind and deaf, so as you may imagine, touch was not a comforting thing, but an intrusion to his dark silent world. The part of his brain that thinks, remembers, or feels was not formed.  Basically he was living, but not experiencing. 

Max's mom did an amazing job raising him. He ate and slept and cried.  He never smiled and always screamed when being held. He never spoke and his eyes were always closed. His little body grew until one day at age 3 he quit being able to eat.

His mother took him to a children's hospital where test after test was run to determine why max couldn't swallow anymore.  The doctors finally told her, "his body has just outgrown his little brain."  The choice was now hers, should she have the doctors put in a feeding tube or let him live out the rest of his natural life as he was able without medical intervention?

Bravely she decided not to intervene with his disease course.  So he came into our hospice care for the last weeks of his life.

Everyday when I visited Max I had to do a lot of internal work. Emotionally I'd see a little child with an otherwise healthy body asleep, with little thin arms and a dry little mouth. A part within me said "FEED THIS CHILD" and I'd have the urge to find a bottle and at least try to let him eat.  I'd watch his heart beat through his shirt and smooth his hair and pray that we weren't causing him pain.  Logically I'd have to tell myself over and over again that even the smallest amount of milk would cause him to choke and cough and have more discomfort.  I also had to force myself to remember his condition.  This wasn't my daughter that I was starving to death, this was a little boy who had lived his life in the dark, in silence, with an occasional intrusion of touch that frightened him.  A boy who's brain had reached it's limit on what it could support. 

I can tell you that the longer he lived without food or water, the harder each visit became.  In total, he lived nearly 3 weeks with us.

3 weeks that I tried to figure out why I felt so torn about his eating, when almost every disease process we can get, ends with days and weeks of not eating.  Everyday I treat people dying of cancer, of liver disease, of dementia or heart disease, who all quit eating.  It's natural.  So, was it his 3 year old age or the inner mom in me that found it difficult?  Still trying to sort it out.... 


Sunday, January 20, 2008

Visions

I'm always intrigued at the things people talk about and "see" as they get closer to death. Especially the things that are unexpected.  For instance:

There's a sweet elderly Jewish lady at the "house" with colon cancer.  She's still very coherent, but isn't eating much anymore, and can't get out of bed.  This week when I sat down for one of our regular talks she said, "Last night I went to Heaven and was told to put my arms around the 2 that loved me most"  I encouraged more by asking who those people were. "Jesus" she said matter of fact like, "He suffered so much, you know?".  I waited a while and she continued, "God was there too."  I asked if he said anything and she broke into such a wide and peaceful smile, "that I was well loved"

Of course people of the Jewish faith believe in Jesus as a wise teacher, but I didn't expect him to be held as one of those who loved her the most. It gives more credibility to her vision because it's not what you'd expect. I'm looking forward to Monday, to see if she's had any more visits to Heaven.  


Wednesday, January 9, 2008

Impossible odds

Manuel was born 12 weeks early to first time parents of a small town in my state.  The trauma from needing a ventilator with such underdeveloped lungs led to permanent lung damage that required a tracheotomy to be placed.  A ventilator is hooked up to this small hole in his neck at all times.  He also was so young, part of his throat hadn't formed right, necessitating that a feeding tube be placed for him to eat.  One complication after another, until an entire year passed in the children's hospital I'm rounding at this month.  A year in the same crib, same room, same nurses. 

Manuel's mother came to this hospital when Manuel did, and hasn't been back to her home since.  She spends each day with him, and each night at a Ronald McDonald home for parents with sick kids.  Her husband, to keep his job, lives hours away, only able to visit every few months.

As Manuel's 1st birthday approached everyone was in good spirits, because it looked like he could finally go home. He'd still be on the breathing and feeding machine, with visiting nurses everyday to their home, but it would be home.  Manuel's mother, who spoke no English when Manuel was born, now conversed with the nurses with ease about her delight to finally get out of the hospital. 

They had to just do one more CT scan. 

The CT scan showed the unthinkable, some spots on his liver that came back as liver cancer. Completely unrelated to his other medical problems, this child was unlucky enough to have a very rare cancer as well.  You can imagine what a hard conversation it was to sit Manuel's mother down and tell her the news.

The nurses tell me that she took the news stoically as the doctor talked about options for chemotherapy that may cure the cancer, if his little body can survive the treatment.  The cancer is rare enough that someone as sick as Manuel has never been treated.  As soon as the doctor left though, her tears flowed strong and bitterly. 

Manuel is due to start the chemo tomorrow.  His parents decided to give it a shot.  I watched Manuel today chewing on a plastic cap of his feeding tube, laying on his back in his crib, having never sat up, or put weight on his legs, having never said "da da" or even cooed. And now, despite all those setbacks, he has to battle cancer.  Doesn't seem fair.