Finding the Gratitude

All the discussions on Social Media about Gratitude caused me to pull this out of my Work In Progress. I have a lot more to say about the concept of finding thanks in all situations, and fostering positivity instead of glum attitudes - but I'll leave it with this for now.

 
The summer of 2009 was relatively quiet. This was good, very good, because the previous five months were not so good. All the complications of Tom’s disease seemed to show up at once, definitely unbidden. So, by August, Tom was feeling much better. The NG tube that was inserted in June was really helping. Not only was Tom able to put on some weight, his appetite improved for regular food as well.

At the end of the month, we were enjoying ourselves at our annual family reunion camping trip. We decided to let Tom have one night off from his tube feed, so he wouldn’t have to be anchored down by the pump. So while it was still light, he and a group of cousins were having a raucous game of wiffle ball. Then, Tom appeared back at our cabin, limping.

“I twisted my ankle, it really hurts.”

Nothing appeared broken; there was no horrible swelling or anything that needed serious medical attention. Tom rested for a bit by the campfire, and I promised ice to help with the discomfort, but soon he was off with his cousins again, just slowed down a little.

No big deal, right? Exactly right, but this memory is still SO vivid for me. While Tom was describing what happened, and wincing a little, an irrepressible thought kept bubbling up inside me, this is awesome! Yeah, it seems crazy. But I was actually thrilled with this injury. Thrilled!

My reaction surprised me at first, but it made sense. After months of watching Tom lying listlessly on a couch, or in a hospital bed, or halfheartedly going to school, this was a wonderful feeling to see him running around like a regular kid. To see him active enough to actually get hurt – what a wildly good feeling this was!

Also, a sore ankle, this was something I could handle. Not to make light of orthopedic problems, but to me, this sort of injury was more black and white (or black and blue, if you will). Break or no break, tear or no tear. At that very moment, we were coming off of a real uncertain time with Tom. Even the month before, when he was listed for transplant, there were still questions. The black and white part was that he was going to need a new liver. But there were questions about his lowered blood count and other issues.

So this minor injury was really major in that it reinforced a sense of gratitude. I was thankful that I could have small moments like these; moments that made me confident I could handle the bigger issues ahead.

Never Running on Empty

I wanted to write this for a long time. Hell, l wanted to write anything for a long time, besides a grocery or to-do list. As most of you know, the last six months have been pretty nasty regarding Tom and his health setbacks. Were these problems caused by his liver and transplant issues? Not necessarily all of it. What does this have to do with the American Liver Foundation and Marathon Monday? Stick with me, and I’ll explain.

When Tom was diagnosed with ulcerative colitis in August it definitely was connected to the diseased that ruined his liver, PSC. PSC – Primary Sclerosing Cholangitis many times presents with some sort of inflammatory bowel disease. Because it has an autoimmune component, right after Tom’s transplant, we were told that Tom could still develop an IBD.

So, that was a bit of a blow. But besides the nuisance of the colonoscopy interfering with a new job and vacation on the Cape, it was not devastating. Colitis CAN be successfully managed.

Tom was an ALF LIVEr Champion in 2010

We are pretty sure that his femur fracture on September 2^nd was not related to liver disease, although it was certainly suspect for a while. But still – it was not fun. At all.

 

What about the sudden migraine in early February that landed him in the hospital? Well I don’t think there was a direct connection – although it seems there was a connection between that terrible head pain, and the severe bout of cyclic vomiting that Tom went through his first year after transplant. Many sufferers of cyclic vomiting also have migraines. In fact, the stomach issues themselves are often referred to as abdominal migraines.

Migraines are often triggered by stress. Hmm, where did that stress come from? Any guesses?

Then there was the other hospitalization this year, smack in the middle of February vacation. Now we’re really making a connection.

That Tuesday morning Tom felt extra tired and chilled. Then he looked feverish. Took the temp – 102.3 – yikes! Called Boston, were told to bring him in right away, since he was on three different immunosuppression meds (one for the transplant, two for the colitis) – the docs didn’t want to mess around with that.

Of course, probably because I gave him some ibuprofen at home, his temperature was completely normal once we landed in the Children’s ED (Emergency Department – to say ER, well it’s just soo yesterday). But his blood work revealed a startlingly low white blood count, specifically his ANC (absolute neutrophil count). Right there that was reason to admit him.

After a few days, there was no clear cause of this low ANC. But what we did learn was very concerning, and this is the crux here, the BIG connection to liver disease. One possible cause was the medications that Tom was already on, especially 6MP, a drug he was taking for his colitis. (It also used as part of a chemo regimen to treat acute lymphoblastic leukemia).

And another possibility was cholangitis. A bile duct infection. Now why would someone with a healthy liver have a bile duct infection?

Because the thing is, Tom does not seem to have a total 100% healthy liver any longer. Because, the thing is, it looks like Tom’s PSC has come back.

You read that right.

PSC has been known to recur in (I think) 5 – 10% of cases.

Although one of his doctors very recently said that she’s not entirely sure that the PSC did recur – still another doc was pretty certain. Hey, not that we want to look for trouble, and if this has recurred, then we’ll just move forward and think positively and the usual. The consensus is that recurrences typically don’t progress as fast.

But since February, this new knowledge has been pretty tough to handle. The depth of worry has been hard to explain, and harder to go through.

Zac's Mom, Heather is running her first marathon with Tom Nealon, who is running his last.

The good thing is, he’s doing pretty well at the moment. He’s got one college acceptance locked so far, another school seems very interested, and he’s going to Prom –

And he started track. You know his goal, don’t you?

He wants to run Boston next year, on the Run for Research Team.

I'm tired of liver disease. I'm angry. There's no one to blame, it's not like that, but still there's anger, there's frustration and there's definitely fear. And we're just one family going through this. There are too many others. 

WE NEED TO CHANGE THIS.

Matt Noyes ran for Tom and Zac Rue in 2011

So next year, there will be a plea directly from Tom. And this June, there’s another Liver Life Walk – but for now…please, please, kindly consider donating to the following fantastic people running for Tom this 25^th Anniversary year, Katie Chisholm, a new match, her first marathon – can’t wait to meet her this weekend! And Courtney Fratto, one of Tom’s transplant nurses, her first outing with the RFR team, she will do great, and Patrick House, his third marathon with the RFR, and his second time running for Tom. Patrick won Season 10 of The Biggest Loser and ran with the RFR team for Tom along with his cast mates Elizabeth Ruiz, Adam Hurtado, and Tracey Yukich.

And we are all so proud to know the following - some are liver patients, or transplant recipients, and are all around good people who want to help. And help they do. And they are all running Boston this year, some for their final year. Please consider donating to:

Jim Sparks 

 Scott Rumrill

Sherri Fields

Nick Giordano

Tom Nealon

Deb Tully

Nhu Vu

Heather Cline

A Day in the Life...

A tense ride on 93-S to Boston. Why at 10:00 am is there such a backup? Tom alternates between vomiting, moaning, and falling asleep. We try to hold his hand while he vomits. We try to make sure he’s breathing, that it’s genuine dozing, not unconsciousness. Not that he’s ever slipped into unconsciousness on our watch, but you never know.

It all started a couple days ago with a peculiar headache. Localized to above the left eye, this came on out of nowhere. While it was uncomfortable, Tom was able to go to school and also get to a couple of appointments including physical therapy. But by Friday morning, the pain became intense, the intensity brought nausea, and then vomiting. Early morning call to Boston, they say to bring him in to the clinic office (as opposed to the ED, where he’d sit for too long).

High blood pressure was suspect. Now Tom has never had problems with either a headaches or high BP until this week, so this is all new, and frankly, quite scary. One of the first things Tom whispered to me in the early morning was, “do you think I’m having an aneurism?”

Dear God, I flippin’ hope not.

Hours later, Tom is resting in a room on 10 South, his usual floor. And to think that just three days previous, he and I were visiting a friend recovering from surgery on the Northwest wing of this same floor. I know Tom was enjoying being a visitor for a change, instead of a patient. Now he’s the one in the bed. Again.

Oh look, a uniformed officer stands guard at a patient’s doorway in the room across the hall. It’s not the first time I’ve seen a cop or hospital security standing in the doorway of a room, either on a floor or in the ED, you know, big city hospital and all that. (It’s never clear though, exactly who is being guarded, the patient, or everyone else and darn-it, I’m too polite to stare.)

I’ve been in this place many times, to paraphrase Leonard Cohen, “I know these rooms, I’ve walked these floors”. My moods are variable, and yesterday I was more depressed and on edge. I am taking a lunch break in the lobby, and I stare with half-focus at the constant stream of people walking in all directions, to and from elevators, main doors, the CVS, etc. 

I guess they all fall into different categories, but there are certain visitors that cause me to drop my gaze, avoiding eye contact. These are the moms and dads with paper name labels stuck to their shirts. These labels have just a last name, and it means that they have a child undergoing surgery upstairs on the third floor. Sometimes these parents look nervous; actually they almost always look nervous at some level. But there’s another look I sometimes see, something I read as their whole body shuffles along in slow motion. They are shell-shocked. These are the people I can’t bear to watch, because I see myself reflected in their disorientation, in their fear, in their exhaustion. I don’t want to be reminded of my own pain. 

I definitely have no problem reaching out to someone who needs help. I’ve joined in the 60 second elevator commiseration thing with random people. I’ve had long conversations with other parents in the surgical waiting room. I’ve compared notes with a dad in the common kitchen while we were searching for the last grape Popsicle – 

Me: “yeah, my kid has a nasty GI infection”

Him: “my kid has no stomach” (said with no anger, just matter-of-fact grace).

"Watching the Machine" Sculpture by George Rhoads. Manhattan, NY. - Beyond My Ken.

But when I’m really in the tense frame of mind, I have to be selfish and turn inwards. As I side-step the stroller-bound kidlets staring up with mouths agape at the somewhat annoying perpetual motion machine, as it clanks and chimes, clacks and dings, I get weary of the sameness of the routine. As this huge sculpture perpetually entertains new crop of patients and their families – I just want it to be all over with – I want at least a diagnosis, and at most – to not be here at all.

I feel trapped inside that huge 12 x 6 x 14 cage of wires, balls and brightly colored shapes. I’m moving on a path not of my own design, and there’s no natural conclusion, just the same thing, over and over. Or maybe another way to look at it, the path is NOT clearly laid out, the way it is in George Rhoads’ sculptures. Sometimes it feels more like Disney World’s Space Mountain. Huge dips and swirls, but it’s all in the dark. I don’t know that’s ahead.

I don’t know which is worse.

True Colors

For whoever has been following Tom’s journey these last five years, you know I’ve used the Homeland Security color-coded “threat monitor” to symbolize how things are going with his health issues.

He’s been from green to red and all the colors in between. There have been lots of calmer green and blue times, like a beautiful ocean of health, for which we are all grateful. Extremely grateful. But the last few months have become muddled and murky.

As you may or may not recall, he went through a terrible roller-coaster series of events and complications in a five month period in 2009, from February to July. Too much to recount in this post, but one incident comes to mind now.

Tom had been admitted in June of 2009 with kidney failure. He was given a feeding tube. It was all a bit dramatic. But finally he was being discharged, and he was getting dressed, we were filling out paperwork, and things were OK-ish. Then, one of the doctors came into his room, closed the door behind her and said, “Sit down, I need to talk to you all.”

If ever there was an example of a WTF moment, this was it.

“I need to tell you that one of the staff that has been taking care of Tom during his stay here was sent home with flu-like symptoms and Tom needs to start on an antibiotic right away.”

OK, our hearts started beating again, we started breathing again, and I almost wanted to strangle the serious and concerned doctor for scaring the shit out of us. (And seriously, what color on the chart would we ascribe to this moment?)

Are you fucking kidding me? OK, sure, whatever the flu du jour was at that point shouldn’t be taken lightly, but come ON. After all he’s been though not only this week, but in the last few months…this is such a huge deal right now? 

But I didn’t say that. We asked the right questions and continued the discharge process and Tom was fine, no flu-like symptoms followed him home.

And in the intervening years between then and now, he’s still had lots of ups and downs and drama (like a transplant) and lots of cool things, and LOTS OF LOVE.

Ahh, the love. There have been an amazing collection of people expressing amazing feelings of love and support for Tom, and doing some incredible and selfless things. From sending a simple get well card, to sending mountains of gifts – it’s all been so uplifting.

Our network of support, our village, keeps expanding and it’s wildly gratifying. Every time we show up at an ALF event, for example, we feel everyone’s joy for Tom’s health victories, and even their pride in his overall accomplishments, whether it’s getting off a medication, or getting on the honor roll at school – we really can feel the love. It’s tangible. It’s good.

And the same thing happens at family reunions, or a routine trip to his pediatrician for an annual checkup (they rave over his continued improvement), or church – it’s very cool.

Yet, and here is my frail human weariness kicking in, when things go awry, as they have gone quite scarily awry since August, when I have to give a poor health report for Tom, I feel like I’m letting down so many people.

“Oh now Mary, don’t feel that way”, you think. “It’s not like you can help it or are causing it” – and hell, you’re right! But I do feel exactly that. And mind you – no one gives me that impression, that they are disappointed in me, or Tom.

I don’t know exactly why I feel this way, but sometimes I have to imagine that people may only have a limited bandwidth for concern, and maybe they’d like to cross a few people off their lists of Folks to Worry About.

If you add social media to the mix, that’s a whole new way to examine the sharing of news, asking for support, giving support, and then alternately feeling overwhelmed with a whole news feed of illness or – or joy – and the whole pockmarked spectrum of human emotion in between. 

And I’ve got to allow that some of this electronic network, the followers or friends or connections, are probably just plain tired of reading the latest blurbs about my Young Prince. Enough already, we get the point, you’ve got a sick kid, yaddah yaddah, the story’s just too darn old!

 

But the reality is most of this angst is created in my head.

So when I do give an honest report on Tom’s setbacks, 99% of the time, the responses are filled with genuine concern. Old friends and new, they care about where Tom is on the color chart. So, I have to trust in that care and love that others continue to shower over us.

Speaking of showers, after the clouds part and the sun cautiously begins to shine again, every now and then comes a rainbow. Beauty after the storm, or in spite of it, that gift is what we receive no matter what kind of news, no matter where Tom falls on the chart.

A beautiful rainbow of true colors.