A Wish Fulfilled

I haven’t talked about this yet for some reason, but last summer, I’m driving home from work and I get a call from a number that looked a lot like the number of the Transplant Nurses, so I answer it instantly. It’s, of course, not one of them (or the plotline of this blog would be very different). It’s one of the Social Workers from the hospital (I don’t think it was one of the two we met/worked with), asking if we were interesting in being contacted by Idaho’s Make-a-Wish foundation.

I stammered a bit. “Um, just what do you think is wrong with my son?” Which confused her a bit, “Isn’t Make-a-Wish for kids with a terminal condition?” She rushes to reassure me that no, they deal with kids who have all sorts of critical illnesses == like renal failure. Meanwhile, I’m sweating bullets — for a second there, I was a little concerned. We chuckle a bit about how she’d be the last one to tell us something new about his condition and chat about him in general. In the end, I say, sure, they can call.

I go home, tell me wife the new thing I learned about Make-a-Wish and we pretty much forget about it.

Skip to a few months, a form about interests, and one transplant later, and they reach out to us and we have a meeting — there’s two volunteers (Michael and Mildred) and us. Mildred pulls my wife and I aside to fill out some paperwork and whatnot. Michael chats with Machen about his interests and whatnot — oh, and gives him this gorgeous looking book about the history of the Ford Mustang.

I’m probably missing some stuff, but I really had little to do with the whole process, and I’m trying to keep this from being the usual long post. Those are the highlights — after the meeting we had with them, they went off to think about whatever it was that Machen told them (really, I have no idea) and then they called about a month and a half ago, telling us that Machen’s wish was going to be fulfilled today, but they didn’t want him to know about it until the moment.

So Saturday, we tell load up the van with the kids — telling them we’re on the way to do something, but first that Mom wants to stop by Best Buy. When we walk in, we’re met by Mildred, Michael and a Best Buy associate, David. It just now hits me that we didn’t get pictures of the volunteers with Machen. Rats. Anyway, here’s a picture of a pretty stunned (but happy) Machen with David.

And then one of all the family, too.

I really do feel bad about the volunteers not being pictured.

Anyway, Machen and David spent a little more than 90 minutes putting together a dream system that will be delivered at some point in the future.

I’m still not sure that he’s recovered from the day, nor has he really stopped smiling. The generosity of these volunteers and the organization is really something. We can’t thank them enough.

Oh, look — I did find a picture of Mildred, you can see her standing behind Machen there (Michael would have been to the right).

A Dream Drive for My Kid

Last Friday, I described the unexpected delay in our return home. In between the time when the nephrologist and radiologist had found something and the time when they decided how much of a thing it was that they found, I mentioned that I’d received a phone call, and said the timing “was absolutely the right time and a very pleasant distraction.” Then I promised to tell you the full story when it was complete — I’ve put that off for a few days, hoping to get some better photos than the ones I’ll be using. But those haven’t shown up yet, and I want to post this while it’s still fresh-ish.

Earlier in the week while waiting for something in the lobby area for the Ronald McDonald House, I’d seen an advertisement for something called, Dream Drives for Kids. It’s this non-profit that “provides sick and medically fragile children access to amazing exotic cars for an hour-long experience we hope they won’t soon forget. Our goal is to create joy by taking the focus off of doctors and disease … and putting it on Ferraris, Lamborghinis, Porsches, Mercedes, and more through a two-hour, fully interactive sports car experience!” I went back to the room, forgot about whatever it was I was supposed to be talking about and told Machen about this — naturally he was interested, so we called and left a voicemail which led to the aforementioned call.

Before I continue — isn’t that just the coolest idea? It’s also a nice justification for someone to indulge in car collecting — I say that without cynicism. Hey, if I had the means to collect cars, I’m not sure I’d be nice enough to do this. But really, when you have a medically fragile or sick kid, so much of their life can be wrapped up in their condition — giving them any kind of a break is a pretty great thing. This? Well, it’s just all kinds of great.

Now, they’re in the middle of a move — which sounds pretty complicated (I think moving books is difficult, books you can put in stacks). So Machen didn’t get the full experience — no tour, for example — he got plenty, though. After a brief discussion with them on the phone, Machen selected a Lamborghini to ride around in, a 2002 Lamborghini MurciĆ©lago to be specific.

Sure just saying “a ride in a Lamborghini” is pretty impressive, but when you can say “a 2002 Lamborghini MurciĆ©lago,” it’s much better. It’s in the details, no?

We make arrangements and meet up with them (I don’t see their names anywhere on their sites, so I’m not going to name them). They are about the friendliest people we met in Portland (which is saying something — 94% of the people we met in Portland were tremendously friendly), They took some photos of Machen and the car, talked to him about the car and one of the scandals associated with that particular model (apparently, many Lamborghini stories involve some sort of scandal), some of the features it has, etc. Then he started it up.

Sorry for the annoying beep at the beginning, I cut most of it out Note the contrast between the plane taking off nearby to the engine starting. Am told (wouldn’t know…) it’s about as loud inside. My wife’s video looked better, but the sound on mine is better — and I don’t move the camera around during this (sure, she blames the wasp that crawled into her sandal and stung the bottom of her foot, but whatever).

Naturally, after the starting of the car, came the driving of the car — I’m not sure what all they talked about on their drive — the car, obviously; Machen’s health, school and whatnot. We followed along with the family of the driver — in nothing fancy, but very comfortable, and watched the Lamborghini in action (by the way, it was still pretty loud even when there was a car in between us. Not loud in an annoying way, just a not-so-gentle reminder that an engine more powerful than yours is nearby).

I’m not a car guy at all — this is not news to anyone who’s spent more than 14 minutes talking to me (less than that if the topic is automobiles). But it is impossible to stand near this and not become one temporarily. It’s tantamount to standing next to the original The Starry Night and shrugging. It’s really a fantastic machine, and it’s no wonder that my son, the aspiring car guy — smiles like this while sitting inside.

It was a great experience all around — definitely the most enjoyable experience Machen had while in Portland (not saying that he’s not grateful for the kidney, not thankful for the care or anything like that — but on the whole, it wasn’t a fun time for him). But this? Dream Drives took his mind off of everything for a while and let him experience some joy.

Here’s a couple of other pictures — when we get the others (taken by someone who knows what to do with a camera, and not just a couple of parents with cell phones), we’ll share some of them. I think she got some good shots.

Some words of thanks…

Been thinking a lot today about everyone who has helped us get to this point — especially this last week, and figured I’d publicly thank a bunch of those people. I know I’ve left off too many. But I tried to get everyone. If anyone’s offended that I didn’t name you, I assure you, I’m more embarrassed by the oversight than you are offended.

Mega (and very sincere) Thank Yous to:

Doernbecher Children’s Hospital and OHSU, who have some amazing medical and support staff — and even the less-than-amazing ones are top-notch. We’re keeping a list so we can do something for them later. But just in case they’ve got someone checking teh InterWebs for mentions of their institutions — we love the people here.

My sister and the fellow church member (anonymous per request) who were ready to participate in a paired exchange on Machen’s behalf. We owe you so, so, so much just for doing what you’ve done so far in this process. We don’t have the words — or any other ability — to express our gratitude enough.

Machen’s siblings and grandparents back home for taking care of so much for us — not to mention their texts/calls/etc. helping us through the last few days (plus the 14 years and change of help getting us to this point).

The rest of our extended families — cousins, aunts, uncle, great-aunts, great-uncles, grandparents, late great-grandmothers — who have helped in all sorts of material, psychological, spiritual ways.

Machen’s school for their support and encouragement (and the work they’re going to have to do to accommodate Mr. No Immune System in the future).

Our brothers and sisters in Christ at Nampa URC — you’ve asked questions, offered assistance, helped with funds, encouraged us and (most importantly) prayed for us for years. Thank you. (Same for the brothers and sisters in other congregations and literally around the world who have done this — for example, I’ve been reminded recently of one brother in AZ who spent more than a few late nights/early mornings talking all this out with me 14 years ago, and got me through a couple of dark nights)

Our super-supportive bosses and coworkers for allowing and putting up with the disruption this has caused — sure, they’re technically legally obligated to do so, but we’re pretty sure they’d have done it anyway.

Everyone who has/is/will contributed to the GoFundMe. Seriously — you made this possible.

The nephrologists and pediatrician who’ve got us this far (and the pediatrician who will watch over things in the future) — I’ve already talked about you in previous posts, so I’ll keep this short. Wow. You set the bar pretty high for medical care when it comes to Machen. When people fail to meet our standards in the future — it’s your fault.

Kinai — just because.

Overdue Update 1 (of 3): Paired Exchange

Let the record show, I’ve started each entry in this series of posts a number of times (at least 4 each) over the last months. Let he record also show, I’m easily distracted and pretty lame, because I should’ve been able to actually post them weeks ago.

We’re going to start with the easiest — and most important update. Machen’s now listed on another list — one for paired exchange. I mentioned the possibility of this last year. After months of tests — and a nice little scare that turned out to probably be nothing, definitely nothing that’ll stop a kidney donation — my sister was approved to be a donor in a paired exchange.

What’s that? “When blood tests reveal that a donor is not compatible with their intended recipient, both the donor and recipient may choose to enter an exchange or ‘swapping’ program with other incompatible donor-recipient pairs” (from OHSU’s website).

Now, my sister’s got a rarer blood type, so we’re told that this isn’t likely to bear fruit. The metaphor they apparently prefer to use is that she won’t get a lot of people asking her to dance — but the way we think of it is that given the rare type, there’s someone out there who really wants to dance with her. We just have to hope that they know someone with an O blood type. Because, again, a Live Donor is so much better than the alternative.

Anyway, that’s another hope for us. The best thing, of course, would be for us to stumble upon a matching donor. One more time, the basic requirements for that would be:

  • blood type O
  • 21 to 55 years old
  • BMI of 32 or less
  • not diabetic
  • no history of high blood pressure

Machen Update 9/7 (just written late)

Oops. Forgot this. Saw Machen’s specialist on Wednesday–good visit all around. Got some concrete advice on his diet, which isn’t nearly as restricted as we thought it was from the vague statements he’d given us before, like “limit X.” Well, how much is limited? And he was so distracted with things like making sure the kidney was actually working, he’d not get around to answering. But we must’ve asked at the right time this visit, because he sat right down and wrote a little list for us. Phew.

As for the kidney–everything’s looking good. At this age the best indicator of kidney function is growth, and he’s doing fine there (sure, he’s the size of Owen when Owen was half his age…but hey, just keep thinking Gary Coleman, and the kid’s doing fine). As an aside, Machen just shot his father a look that could’ve gone with a “What you talkin’ about, Willis?” line. The blood levels are good–his creatinine, which is what most eyes are on, had actually gone down. This was fantastic news, as the doc had pretty much concluded that he had leveled off and would only get worse from here on out. We got a new factoid this time–doc crunched some numbers and said his kidney was functioning at 51% of what it should be at 18 months (+/- 5%). As bad as that sounds, the doctor was very pleased with that number.

Other than that, he’s jabbering up a storm and climbing everything he can think of. We’ve never had such a climber before–kid’s just fearless. Dad figures he knows he’s got this chronic illness and figures he has nothing to lose. Mom figures her husband need to spend a little more time in reality. Machen is spending more and more energy trying to be one of the gang with his older siblings, and frequently succeeds. Owen has taken to spending a good deal of his free time just hanging out with his youngest brother, it’s very fun to watch the two of them.

Oh yeah, lastly, we have another baseball fan in the house. One of his favorite things to do is check out mlb.com on his daddy’s lap. And last Friday while everyone else was excited about the game, he lifted his arms above his head and yelled “Yankees!” Truly, a proud moment.

So that’s the state of the kid. Thanks for your interest and prayers–they’re working.