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I was ordering photos from Snapfish tonight and finally uploaded some off of Mark’s phone that he took last December. So I was quietly scrolling through picture after picture of Austin in the hospital —  sad pathetic faces as he was recovering from surgery in the PICU, goofy silly smiles as he was playing with Braedan on the movable hospital bed, contented sleepy eyes as he gazed up at his glittery wishing stars . . . and I was pretty amazed, yet again, at how far we’ve come. How that seems like a lifetime ago and also seems like just yesterday. How it feels like we were completely different people living in a completely foreign world, but is sadly so familiar.

And then I finished my slideshow, a bit dazed, and Snapfish popped up  to announce their great deals, as long as I ordered by midnight, 30% off and free shipping (!), (it is Cyber Monday, after all): I could make a flipbook of my images or have it printed on flowery postcards or even emblazon it across a ceramic coffee mug! Look at all the incredible things I could do with my image! They even had samples, all right there in front of me, with my very own photo already inserted into all these creative little trinkets. What great value! Wouldn’t this be fun?

Only here is the image they were bombarding me with, this is what I could drink my morning coffee out of:

 

Oh dear. All I could do was laugh. I brought Mark in and he laughed too. It’s okay now, you know. It’s all okay.

Just watch out for your holiday card this year . . .

I hope everyone had a lovely Thanksgiving weekend with their friends and family.  I remember when this weekend was nothing but one long trip to the bar, night after night of catching up with old friends . . . not so much these days. Ours was rather boring, actually, since Braedan was sick and we were mostly housebound (except for our two-in-a-row Thanksgiving dinners– the Gallaghers’ in the afternoon followed by the Dietrichs’ in the evening, giving new meaning to the term “overeating”).

As always, we are struck by how very lucky we are and how very far we’ve come in the course of the past year. It has been another remarkable journey, made all the more remarkable by its happy ending. On Friday night as we lazed about the living room, Austin decided to switch up his pajama top and bottoms because he wanted to “be a superhewo.” Of course, this is one child who need not don a costume to achieve superhero status, but it did make for cute pictures:

Thanks for all the responses to yesterday’s post.  First and foremost, I am no saint of a mother. Not at all. I’m impatient with my kids and short-tempered and have learned (the hard way) that screaming, “BE NICE!” is not the most effective parenting technique.

But I am quite pleased at the number of people I’ve talked to in the past twenty-four hours who’ve said that they’re now inspired to do something similar this holiday season. I told the boys this afternoon about friends who’ve heard they’re buying gifts for others and now want to do the same. So instead of just bringing Christmas (or Hanukkah) to two children, they’ll be responsible for bringing Christmas (or Hanukkah) to many. They thought that was pretty cool.

Austin is so into collecting money for our Providence House boxes that we used the extra hours of sunshine this afternoon to clean out my car (waaaay overdue), finding another $1.58 in sticky coins. And Braedan is positively wowed by the fact that we might round up an entire hundred dollars. We’re gonna cut coupons as an additional lesson in stretching our money as far as possible to have the biggest impact. Of course, I’m not actually going to bring all our change to the store — no matter how great a lesson that may be, I’m just not willing to do it.

I called Providence House today to see if they would take used shoes or clothes and they said no, only new, which is sort of a bummer but also understandable. She did say they would take books, puzzles and educational toys or games if they appeared new (of which we actually have a few). But mostly, we’ll be buying basics like diapers and baby food. If any of you want to add a few small items to the boxes, you can just drop them off at my house or bring them to me at school or wherever you see me before December 10.  I know it would seem silly to drive all the way down there to deliver a single bottle of laundry detergent, but if we work together we could make quite a significant contribution . . . and quite a significant difference.

Speaking of collecting and delivering small items, I have another amazingly simple idea. When we were in-patient, I was lucky enough to shower at home almost every day. But for most parents, you’re stuck in the hospital, far from home, often having arrived with little warning and little packing and perhaps no toiletries.  The floor staff provides toothbrushes and mini toothpaste, plus soap and baby shampoo, but that’s it. And I, for one, can not wash my hair without conditioner. It’s not about vanity — it would simply get too tangled to pull a comb through (and okay, it’s a little about vanity — you already feel awful, no need to look awful too).

So I spoke with a woman today at the Ronald McDonald Family Room at Rainbow.  This is a volunteer-run space with computers and massage chairs and old magazines where parents can unwind or take a small break from the exhausting work of watching over their sick child. They have free bagels and coffee and an always-full basket of candy to choose from. So I asked the woman if they would keep a basket of sample-sized toiletries for parents to take when necessary. She was thrilled and said they’ve had one in the past but it’s not currently stocked.

Soooooo, if you have any hotel shampoo (and conditioner!), lotions or soaps or even those samples you get when you buy make-up at the department store, bring them to me and I’ll put together a basket for the hospital. It’s such a tiny gesture and seems so minor, trite even, in light of what these parents are dealing with on any given day, but it’s nice to be able to wash your hair and even nicer to indulge for a brief moment.

I hope I can continue to inspire you. As so many of you continue to inspire me. Thanks and giving all around.

My boys have a bad case of the gimmes. And the early arrival of the holiday season is only making it worse. Breadan has already circled every single toy in the Target and Toys R Us catalogs, with the exception of princess and Barbie gear. He then stapled together seven sheets of paper to create a scroll for recording how much money all his gifts would cost, carefully adding it all together, remote control car by remote control car. He’s smart enough to round up (no $0.99 for this kid) and counted by tens to a whooping grand total of $1,940.00!

Okay, I thought. This is fine for a math lesson. But not so much for a life lesson.

So Mark and I have been trying to figure out to how help them see outside themselves and their ever-growing list of wants, wants, wants.  Especially considering that last year, they were the recipients of another family’s kindness and generosity. My, how quickly we forget.

I did a little online searching and found a few good options that will allow them to actively participate in giving: One is at Bellefaire, where they have Wish Lists — 2,300 of them in fact! — written by the children and teens they serve. Each list contains only two items, one “need” like cold weather gear and one “want.” This in and of itself is eye-opening for boys like mine who wouldn’t think of gloves or boots as a worthy Christmas present. Maybe something you get, sure, but not something you actually ask for. So we’re going over on Wednesday to sift through the lists until we find some written by boys aged 4 and 7 and then it’s off to Target.

Then there is  Providence House, which is a “crisis nursery” (that name sort of says it all, doesn’t it?). Their holiday wish list was sad to even read because it had such basic needs on it: diapers and wipes, toilet paper and laundry detergent, canned veggies and baby formula. We talked about it tonight at dinner and the boys were amazed that someone could lack such basic items. Braedan wanted to make sure that the kids still got gifts from Santa, which I answered in a roundabout way — “Well, yes, because they’re still good children, they haven’t been naughty, but usually only one gift.” (I didn’t want to ruin the magic of Santa but also didn’t want to let him take the responsibility of these children off anyone else’s hands.)  Austin immediately suggested we count out the money in our change jar so we could go to the grocery store and start filling boxes. We spent the next hour on the dining room floor, stacking out coins, Braedan carefully counting the nickels and quarters while I tackled the dimes and pennies, and discovered we had an impressive $77 (not including the $5 worth of quarters we set aside so Mark can park near the courthouse). That, coupled with the change in Braedan’s “give” jar and whatever else they find over the next two weeks ought to make for a lot of canned veggies.

I figure if we can turn even just a little of their get-get-getting into give-give-giving — and actually make it exciting and enjoyable — then we’ve done a pretty good job.

 

 

I just got an email from our oncologist (complete with smiley face) with an updated report from the radiologist reviewing Austin’s scans. She was able to go back and find some older chest CTs that had been done without sedation and she determined that these two tiny nodules have been there as far back as March of 2009. That is enormously good news because it means they’re not new (and anything new in the cancer world is always bad). They haven’t changed or grown or done any harm in all that time. . . and therefore they shouldn’t.

Her report ending by saying the findings are “unremarkable”–doctor speak for “nothing to worry about.” Of course, if you ask me, it all seems pretty remarkable.

Just sayin’.

So, yesterday was pretty good.  As we’ve all had to learn (the hard way), nothing in this game is ever straightforward, there are always always nuances.

First, the good stuff: His kidney and liver are unchanged. The spot on the liver is still there; it’s still hard to see clearly (visible in some planes but not in others) and still impossible to identify but it hasn’t grown and hasn’t spread, which makes it highly unlikely that it’s a tumor.  Our oncologist actually thinks we can skip a month and if that next one is also unchanged, we can move to ultrasounds every three months which would be awesome.

His bloodwork was also good. A new low for his creatinine which means that kidney is just working away. The normal range for a small child is 0.3 to 0.8. Back in April and May, when he was well on his way to full blown renal failure, his creatinine was as high as 1.75.  His previous low five weeks ago was 1.03. Yesterday’s? 0.87.  Yup, that’s right–almost normal, almost perfect.

His hemoglobin continues to lower but at a very slow rate. I’d been thinking he might finally need a blood transfusion, since the last was eleven weeks ago, but it looks like we’ll get at least another month before that. So again, good news.

Now for the chest CT . . . and the nuances. The official report noted two tiny nodules, less than half a centimeter in size. Tiny little spots that, of course, are impossible to identify. Nodules are harmless, tumors . . . not so much. The radiologist went back to look again at the last scan from August and determined that yes, the spots were there then too but they’re so small that she didn’t even note them in that report. Not that they’ve grown — they haven’t — but for some reason she was able to see them more clearly on this particular scan.

Most of Austin’s previous chest scans were done under sedation, which causes part of the lungs to collapse slightly, meaning that we can’t compare the two most recent scans to the many done before. So ultimately we don’t know if these little spots have been there for years or if they appeared sometime in the last six months. Dr. Auletta said that no one would call these cancer; no doctor or radiologist studying these slides would consider these spots anything worth worrying about.

So we won’t either. We’ll check again in three months and hope for news that, if not better, at least isn’t worse. We know this process will never ever be without questions and unknowns and small shadowy spots that could drive you crazy . . . if you let it.

But we won’t.

Oh, and when we pulled in the driveway at the end of our long afternoon, I discovered three women I’ve known all my life, old neighbors who are now grandmothers, sliding down the slide from Austin’s treehouse. They’d passed by on a walk and decided to come back and take a peek and then of course wanted to see the inside and once up on that platform found that it was easier to get down by slide than by ladder. They were all a little embarrassed to have been caught back there, but I love it. I’m serious when I tell you to feel free to stop by and check it out in person.  I’m happy to catch any of you sliding down our slide.

Whoosh.

Just wanted to let you all know that the Rainbow Radiothon of the Children’s Miracle Network will be on air tomorrow and Friday on 102.1 WDOK, from 6 am to 7pm. We recorded a new miracle story for Austin about a month ago since this is a different radio station than the one that did his first story (and since his story has completely changed in the course of two years).

Wow, I just re-listened to that original story and it really is powerful (except for all the hoops you have to jump through to listen to it — I will try post a more direct link soon). And they could not have picked a better song. I hope I like this new one as much — I won’t hear it until the rest of the world does,  which always makes me a little nervous. It’s extremely hard to take this three-year-long saga and break it down from a one-hour interview to a three-minute piece, while maintaining any sense of accuracy. That’s one of the reasons I was so impressed with the recent Fox 8 News clip — because they so perfectly captured Austin and his journey in just a few short minutes.

There’s nothing on the WDOK website yet but they did ask for a bunch of photos so they could run slide shows during the songs, so definitely check in over the next few days.  Austin and I will head down to the hospital tomorrow for his afternoon of tests and appointments and will stop by the live studio for an interview, probably between noon and 1.

Should make the day a little more pleasant….

Last Tuesday, we went to the Natural History Museum and I took some photos of the boys sitting on the stone bear outside, right where we’d taken pictures last March. Check out the difference:

More hair, same big smiles

To see these images of my boys sitting in the exact same spot, just eight months apart, makes me appreciate just how far we’ve come. A long long way.

So long, in fact, that it’s time for more scans. This Thursday, he’ll have his usual monthly labs and abdominal ultrasound, followed by the every-three-months chest CT. It’s always a little unnerving to go through these tests. I don’t actually believe that anything bad will show up, but I can’t help but play out the scenarios in my mind. I always imagine the conversation with our doctor, the heavy “Can you talk?” on the phone, the stunned silence, the devastation, the resolve to fight yet again.

Or the opposite, which is what we should get, better get: The happy news, no changes, all clear (or mostly clear, which would be good enough). The relief, one month closer, another small victory to celebrate. A long way. We’ve come a long, long way.

Like every other parent in this Facebook-obsessed world, I feel compelled to share photos of my cute kids on Halloween. First, on Friday Braedan’s school marched in a parade around the block. Braedan had decided early on that he wanted to be a fire fighter, so I thought, “Well, what does a fire fighter need? A fire to fight, of course!” So here are my two boys:

Braedan as fire fighter and Austin as burning house

I got rave reviews for this one as we traipsed
around the neighborhood
.

Austin’s costume was a bit too cumbersome (“boxy”?) for climbing stairs so we ditched it and he was Buzz Lightyear for trick-or-treating.

Visiting the “cemetery” across the street

With their buddies

Homemade extras (wings and badge)

It’s interesting how whatever is happening with Austin’s health makes the holidays take on heightened importance. I feel like we’ve been through so many years now of extra-special Christmas celebrations or Easter hunts or birthday parties, all planned and executed with a lingering fear that each one could be our last.

Last Halloween was an unusual one because on the outside Austin was so apparently healthy, but deep inside (his body and our minds) something wasn’t right. We had already been through a month of back and forth, back and forth, uncertain if the shadow we were watching on his scans was cancer or not. By the time Halloween rolled around, we were determined to make the most of it, a small acknowledgment that the worst might yet lie ahead.

And, of course, the worst did lie ahead. That shadow soon revealed its true self — tumor — and we again found ourselves in the full throes of cancer. But for that holiday weekend last year, and for this one this year, we let ourselves and our children relax. We let them be what they deserve most to be: just kids.

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