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.

Irony

Siting here, trying to help TYP with an assignment (rough draft of college essay for English). He's telling his story of his illness, beginning with how he was so fatigued in 7th grade.

But - he's falling asleep as we work. 

I don't like this kind of irony.

I know it's been too long since I last posted, way, way, toooo long. Whatever. Y'all forgive me, right?

And as I look back on my last entry, I see that I was on a soapbox, complaining about crappy customers (OK, maybe just one crappy customer) that my son had to endure on his second week in a new job.

And voilà - ohhh the irony - The Young Prince has not been working since then. Not because of he became so dreadfully disillusioned about customer service, or ice cream flavors, no. He's not working because several days later (Labor Day weekend), he fell and broke his left femur. 

Huge ouch. HUGE.

He had surgery on Labor Day, a nearly 16" titanium rod - they call it a "nail" - was inserted into his bone to stabilize it while it healed. He came home a few days later, with a wheelchair, crutches, a commode, and a fair amount of pain, and a lot of frustration.

School had just started. He was missing it. His senior year, and he had been looking forward to making it his best year. Tom started running with a wonderful regularity in late spring, continuing for most of the summer. He ran with the cross country team a couple times too, and was contemplating joining them in the fall. But in late summer, before the leg break, there was a setback.

Tom was diagnosed with colitis, which I think I began to blog about around this time. It was a challenge to deal with this, but he started on Prednisone and then Asacol, and the flares were not so bad after a while. Then on August 30th, driving home from the follow-up/teaching appointment about his IBD issues, we got a call from one of his GI specialists. They wanted Tom back the next morning for an abdominal ultrasound. His liver numbers were suddenly too high.

Tom=frustrated. Pissed off actually. Can't blame him.

Luckily, the ultrasound showed nothing horribly outstanding in his liver. We were told to repeat blood work the following Tuesday. But then he ended up breaking his leg over that weekend, and was in the hospital anyway, for all kinds of blood work, X-rays, CT scans, and that surgery. And -- oddly -- his liver lab results were fine!

But his vitamin D level was too low, so he started on a weekly D supplement. The docs also ordered a bone density scan, obviously concerned about such a nasty break in a young person. (The scan would prove to be better than the one he had in 2008!)

Gradually, Tom's pain receded, he was able to start school about a week after his classmates, and slowly he was getting caught up. He was in a wheel chair and had to depend on other students to bring him to classes. Things were working out OK. Then about a week after he'd come home, we saw that his colitis was back with frequent, loose, and bloody stools. More blood work. Back up on the Prednisone. And his liver numbers were creeping back up too.

The poor kid. Terrible timing of it all, and his having to endure both raging colitis and a broken leg AT THE SAME TIME was so unfortunate. But we all managed. Not easily, Dave and I had to take turns sleeping on a love seat in the living room while Tom slept in the den on a longer couch. We had to be near by if he needed to get up for the bathroom in the night.He was not ready for the stairs to the second floor yet.

Actually, the whole thing was one of the more draining experiences any of us had been through in a while. Legit.

So now, things are better in some respects, and still shaky in other ways. Tom's leg is healing well. He had all 22 staples removed on 9/21, and got the OK to start water therapy. (We have not started that yet). His colitis stopped flaring. He stopped using the wheel chair for school several weeks ago. We had a great trip to the White Mountains earlier this month. School work is OK. 

But his liver numbers are still not right. Yesterday, Tom had an MRCP, a special kind of MRI to check his bile ducts. There could be a narrowing that is causing his enzyme numbers to jump. We'll hopefully get the results today. So, naturally, that's all be nerve wracking. And all of a sudden, there are all sorts of college open-house events happening. It's hard to keep up with. And SAT registrations. All the events and tasks that are part of the Senior year are coming fast and furious, and it's hard to keep up when everyone is feeling healthy.

So, wish us luck in all of this. Prayers, and Intentions and all the good stuff - send it our way please!

No Country for Grumpy Customers

If you're a parent - or if you just care strongly about another person - sometimes you really want to fight their fights. And you can, actually, when the kids are little. It's a great thing.

If that kid, or person gets sick, then you can only fight by asking lots of questions, keeping up with medications, and doctor appointments, prayer - and of course trying to keep that person in good spirits.

The medical stuff will always need the parents and champions to help.

But there are other times when you can just listen to some horror story, helplessly. You want to jump up and yell at someone, especially the "someone" who caused your kid pain.

Making a Stand

And now, with the lovely vastness of the internet - I can attempt that.

Hey you. Yeah, you, the inconsiderate rude male customer of a certain ice cream stand in Dracut. I'm talking to YOU.

How dare you. How dare you put your energies into making a sweet young man, new at the job, feel like a nothing. 

How DARE you, attempt to embarrass and belittle someone just because they weren't spot on with the whole counting of the change thing. From what I understand, this young man personally did not wrong you, nor give you incorrect change. So why was it OK for you to give him a hard time about his math skills?

You should be the one to feel embarrassed, especially if you knew his story. Especially if you knew that he had to abandon his first job, being a paper carrier, because of severe illness. Especially if you know how well loved he was by all his customers.

If you knew what a bright, and extremely caring kind of person this young man is - you'd be ashamed. If you understood the depth of uncertainty and worry that has plagued him and his family for the last five years - if you had a damn CLUE - of what he's been through and fought back against, you'd feel rotten.


If you, Mr. Crappy Ice Cream Customer, had an inkling that this kid was actually admired and respected by many of his classmates, teachers, and hundreds of others that have heard him speak of behalf of the American Liver Foundation, maybe you'd ease up.

If you had any damn idea how much time out of school this guy had to endure because of illness, maybe you'd take it down a notch.

But it shouldn't matter that this worker in question has had some very rough patches, you have no flippin right to speak that way to ANYONE, no matter what their history.

But he was a teenager, an easy mark, eh?

So this message actually goes out to a few other sorry souls:

Hey you, Mr, Impatient Fast Food Manager - do you know not only do you embarrass your employees by your loud corrections, you embarrass yourself in front of your customers? It's true! There's been quite a few witnesses to your rudeness. Again, the victim was another young man, a 20something this time, but just young and insecure enough to feel the weight of your ill-timed and ill-chosen words. Easy marks, these poor kids.

We've all been on one side of that counter, sometimes on the other side - we all need to take some deep breaths and practice kindness.