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Team Austin is at it again.

We will be participating in the CureSearch Walk on Saturday, June 4 at wade Oval and invite all of you to join us.  Austin had a sea of red walking alongside him at last year’s unseasonably cold event, a team that was 90 people strong. We hope we can count on that many of you to join us again this year on a much warmer day (it has been moved up a month, so hopefully that statement is true!).

It only costs $10 for adults to register and is free for children, so this is really an opportunity to come out and show support for all the children who are currently in the fight and for those, like Austin, who have come out the other side. This event raises important research dollars but also honors the children and their families who’ve been touched by cancer.

Thirty-six children in the United States are diagnosed with cancer every single day. One fifth of them will die. Half of them, like Austin, will survive but with lifelong health complications as a result of their treatment. Until these numbers improve, our job is not done.

To register, click here. The website has some logistical problems, so follow my directions as closely as possible or you’ll have to jump through lots of unnecessary hoops. After you agree to the conditions, click “Register Multiple People,” which will save you a lot of time. On the next page, click “Join A Team.” Then click the “Select” box next to Select A Group (do not type in the name Team Austin or you won’t be allowed to register multiple people at once). When the team names appear below, click “Join Team” next to Team Austin and proceed to fill out the registration page for each of your family members.

Even though children are free, the organizers do want them to register in order to have an accurate head count. This will also help us reach our team goal of at least 50 walkers.

Walk with us . . . and make a difference.

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The fascinating thing about that last day of chemo a year (and two days) ago was that we didn’t know it was our last.

I remember the day pretty well and I mentioned it in this post. You can see that I never said anything that sounded triumphant or victorious, I never used the words “relief” or “finally,” there was no mention of celebration. We finished on time (and celebrated that small victory), kindly waved to the nurses as they buzzed us out the door, and shouted out a cheery, “See you soon!”

But we didn’t see them soon. Austin spent the next few weeks in the outpatient clinic receiving platelets and blood transfusions, while Mark and I spent the next few weeks researching obscure medical journals, weighing our pros and cons (with the cons always heavily outweighing the pros) and trying trying trying to settle on the right choice.

The right choice eventually found us, thanks to some timely emails from prominent Wilms tumor doctors across the country, and chemo was over without us ever having celebrated that last day. There was no victory lap around the oncology hall, no clapping and cheering from the beloved nurses as Austin completed yet another round. It was instead an ordinary day. We walked out of those hospital doors and, unknowingly, began our ordinary life again.

There’s a victory lap in that.

We’ve had a very busy few weeks leading up to this day. Starting with Braedan’s holiday concert. Here he is with two of his buddies after the show:

And during the grand performance:

And Austin discovering the reverse camera option on my phone (during said grand performance):

Then there was the visit with Santa Claus with their cousins:

And the carefully written letters providing evidence of “goodness”:

(On page 2, after the asking part): “I was good. Because we are buying stuff for families that are poor.”

Then we celebrated Braedan’s birthday at school, with homemade “B” brownies:

Following that, there was the obligatory kid party at Great Lakes Science Center (and fabulous cake made by our old Edgehill neighbors):

This past Monday, my little elves and I drove a full carload of goodies down to Providence House, everything from hand-knitted blankets (thanks Cori) to toys and games (thanks Judi) to boxes and boxes of baby food and diapers and paper towels and bleach (thanks Braedan and Austin).

And now here we are, on this most special day when my sweet Braedan turns seven (we did spend one Christmas in the hospital, after all!). As he ate lunch today, having just noted the minute of his birth (12:46pm), he sighed and said, “Wow, look, we all made it another year.”

Wow, indeed.

Happiest of holidays to you and yours.

 

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.

WordPress just added a “Like” button to their posts. And there couldn’t have been a better time.

We’ve learned to celebrate small victories along this journey. Because sometimes small victories are all we’ve got.  But today was a pretty big victory.

The removal of that PICC line signifies the end of cancer treatment. The end for now and perhaps, we hope, the end of cancer treatment forever. I told Austin, as we finally walked out of the hospital at ten past six this evening, that I hope he never ever needs chemotherapy again in his entire (long, long) life.

The PICC line last week

It was a complicated day, not without its hiccups, such as at ten this morning when I got a phone call from Fairfax saying Braedan was in the nurse’s office with a tummy ache. Luckily my mom had taken Austin to the clinic and I was able to pick up Braedan (who seemed miraculously fine as the day went on) and secure a babysitter all before I was due there at lunchtime.

When I showed up and told Austin I was there for the “long shift,” he reminded me that I was there “for the happy time too!”  I had told him earlier that we were “sort of done” after today. He asked for clarification a couple of times and I said that he was done with chemo and done with sleepovers and done with his PICC line and, aside from some blood draws, mostly done with cancer. And he asked, “Done done?” And I (hemming and hawing) said, yes for now, but that we would have to start again in a little bit to take care of the kidney (he knows all about dialysis already; he refers to it as “the four hour thing”) but that for now, we would be done. To which he replied, “Super-done?”

For us, yeah . . . I guess this counts as super-done.

So we waited through hour after hour of blood, followed by an extra IV antibiotic to clear up a lingering ear infection and finally, finally, as everyone (staff included) was itching to go home, the woman from IV team showed up to pull the line.

It was no big deal; Austin said he couldn’t feel a thing although he sat nervously in my arms chewing on his shirt while it happened. And then it was done and everyone clapped for us and we went on our way.

Whoosh, just like that.

Nothing but a band-aid

And then tonight, after a few meltdowns on the part of both boys, we drove over to my parents’ house and did just what we’ve been waiting to do:

You can click on these pictures to make them bigger (if you really want to see Mark’s spectacular golf tan)

They are now sleeping soundly (nothing like swimming to get your kids to sleep through the night) and we’ll go back again tomorrow. Because for now, for today, we are indeed super done. And that is definitely worth celebrating.

Looking forward to seeing everyone tomorrow.  So far, we have 81 walkers registered (well, I counted some unregistered kids in that total) which is by far the largest team in Cleveland.  If you plan to register at the event, get there between 8 and 9. Otherwise, arriving by 9 should be fine.  Please remember to wear red so we can find easily each other and make a strong statement in celebration of our strong boy Austin.  Of course, you may need to wear red jackets or bring red umbrellas if the forecast is correct (hoping it’s not!).  We’ve never done this walk before so I’m not sure how the whole process works, but we’ll try to get there early (which is not easy for the Gallagher family, trust me) so that we can gather ahead of time.

Thank you in advance for coming out to support us.  It really does mean a lot.

And it’s not too late to join us.

I have some answers to the what-can-I-do-to-help question and this time not one of them involves going bald!

First, and this one is relatively easy no matter where you live, give blood. Austin has been using up his fair share from the blood bank lately so it seems like we ought to refill the coffers in his honor. And if you’re so inclined and have the time, give platelets too. Donating platelets takes a little longer and can’t be done as frequently as giving blood, but is important nonetheless.  Maybe some of you who do this on a regular basis (Chris) can chime in with some advice in the comments section since I’ve never done it myself. I mentioned to my mom the other day that I’d been meaning to and she said, “No! You need to save your strength! Let other people do that.” I don’t really think it’s all that debilitating, but I’ll let the rest of you take that burden away from frail little me. Of course, your platelets wouldn’t necessarily go to Austin (although they might since he gets them so often!) but they would certainly go to some other deserving patient in need.

The next thing is fun and something I hope many of you will participate in. CureSearch, which I’ve written about on the Sites of Interest page, is hosting walks all across the country this spring, summer and fall to celebrate and honor children whose lives have been touched by cancer.  Cleveland’s event is Saturday, May 8 at Wade Oval and includes a short walk (I think it’s just around the pond or something — they never mention a distance on the site so it can’t be long), plus games, music and food. It’s perfect for the whole family and a  great way to celebrate Austin while also raising money for important research (CureSearch is where St. Baldrick’s dollars go as well). The event costs $10 for adults and is free for children under age 16. I just registered Team Austin and am hoping to have 100 people join his team (we’re up to four right now: me, Mark, Braedan and the little man himself) so please plan to come out and walk with us.

The registration page can be found here but beware that the photo on the page is not of Austin. I can only upload one that’s smaller than 50KB and I don’t have a file so small!  Silly, but you already know how cute he is:

Oh, and one more: wish us well for tomorrow’s GFR. Let’s hope this little kidney is still kickin’.

And so, another year goes by.

Today was Austin’s third birthday. Of course, we can’t make it through this day without reflecting back over his birthdays past and how very far we’ve come in three short years.  We celebrated his first birthday while home on furlough, five days “off” sandwiched between 14-day and 15-day hospital stays.  That was the year when everything was still so uncertain; we were still in the thick of cancer, with no sense of what the next minute or day or year could bring. So on that day, Friday September 21, 2007, we had everyone wish for him at the exact moment of his birth. And at 11:48am, all over the country and maybe the world, friends and strangers were blowing out candles and sending wishes off into the universe, carrying hopes of birthdays to come on their wings.

Then last year, when he turned two, everything seemed normal, extraordinarily ordinary. We threw a small party in the yard with family and friends and as he blew out those candles, I thought he would last forever. I imagined him growing up, going to school, riding a bike, learning to read, having a girlfriend, graduating from high school, going off to college, getting a job, getting married, becoming a father.  I believed all of those things would happen, surely with some bumps, maybe not in the perfect order. But I really believed they would happen.

And then came March. And another tumor.

And suddenly, I felt like a fool. Like an ass. Like how could I have let myself be so naive, so hopeful, so trusting.  How could I have so thoroughly believed the worst was behind us when the worst seemed just about to begin? In those weeks, I wasn’t sure he’d make it to 3, let alone 30.

But today came. And, because life is once again back to normal, it was all about dinosaurs. He had a party at the park yesterday complete with a mom-made 3-dimensional triceratops cake.  Now before you go thinking I’m Robo-Mom (as Mark called me with affection late Saturday night as I pieced together this chocolate and lemon monstrosity), this cake was far from perfect. In fact, by the time the party began, the head had come loose from the body, the horns were toppling and we were all joking about dinosaurs becoming extinct. But Austin was beaming with pride as he announced, “Dat a cool cake, Mom.”

The skeleton

The skeleton

 

Coming together

Coming together

 

Almost ready

Almost ready

 

They clearly don't care that it's already falling apart

They clearly don't care that it's already falling apart

 

Last minute repairs (check out their faces!)

Last minute repairs (check out their faces!)

 

Braedan dressed them in matching outfits all on his own

Braedan dressed them in matching outfits all on his own

 

In his new Elmo pajamas

In his new Elmo pajamas

So I’m back in that place yet again, that place of believing so thoroughly in all he will do, see, be in his life. Of knowing he will go to kindergarten and learn to read, he’ll ride a bike and play (non-contact) sports, he’ll kiss a girl (or boy . . . whatever) and drive a car. There will be setbacks and maybe worse than setbacks. But we’ll make it. He’ll make it. Just look at him . . . .

Super Boy

Super Boy

On this day, I know every one of us thinks back to where we were on that morning eight years ago; what we were doing, how we learned the news, who we called first. Everyone has their 9/11 story, just like everyone of older generations has their Pearl Harbor story or their JFK assassination story. But I always think, as we mark this day anew with each passing year, about the other meanings of this date. Lots and lots of things have happened on September 11’s, good things and bad things, big things and little things. People have gotten married, people –several that I know — celebrate their birthdays, people have died in ways completely unrelated to terrorist attacks. 

We have our own September 11 story, one very different from the national story. It starts on Tuesday, September 4, 2007, the day I called the oncology department to tell them that I thought that maybe, just maybe, could it possible that Austin’s tumor was growing. We had just been in the out-patient clinic the Friday before, his doctors had all looked at his belly during a super long day of chemo. But over the weekend, it seemed to be magically growing, something I didn’t really believe was possible (he had four weeks worth of chemo pumping through his small body after all), something I didn’t want to believe could be possible. But by that Tuesday, it was hard to deny any longer, so I called and brought him in and they all looked and asked questions and quietly consulted with each other in the hallway before admitting us to the in-patient floor.

The next morning, Austin had another CT scan and then there was that moment. A moment I’ve described in many previous writings because, well, because it was a pretty significant moment. In they marched, six of them —  oncologists, surgeons, nurses — to break the news that Austin’s tumor was indeed growing; in fact, it had grown by a whooping 50% and was now the outrageous and hard to fathom size of a butternut squash.

That was September 5. Not a very good day. Then Friday September 7, the tumor and the right kidney were removed. That was a good day, a day we breathed deeply and allowed ourselves to rest for a brief moment. But the news we needed, the pathology results that would explain why the tumor had grown so terrifyingly quickly, and that would determine the rest of Austin’s cancer treatment and that might determine the rest of our lives, wouldn’t come back until the following Tuesday.

I do not have the writing skills to begin to describe how excruciatingly slowly each second ticks by when you are waiting to hear whether your child will live or die. Those six days, between when we learned of the growth on September 5 and when the results were finally returned to us on September 11, were definitely the longest and most stressful days of our lives.  We just needed to know. Good or bad — and we fully expected bad because that was the more reasonable thing to expect at that point — we just had to know. Waiting was almost unbearable.

And then Tuesday, September 11 was upon us. This was the day and it happened to be one with a date synonymous with tragedy. I actually considered calling our oncologist and telling him to wait, wait until Wednesday, a day with an ordinary date, to share this news with us. But I knew that was silly; the facts would be the same no matter what the calendar said. And we just couldn’t wait any longer.

And then Dr. Jeff appeared, bouncing like a child, excitement, relief, joy spilling over his professional doctor persona. Austin would be fine. Austin, as you know today, two September 11’s later, is fine. But it changed the day for us. Changed the meaning of an already significant date.

Alongside our sorrow for all that was lost on this day eight years ago, we celebrate all that was saved on this day two years ago.  Alongside public commemorations, we have private ones. Alongside paying our respects, we pay our gratitude. In our house, this day is a good day. A very good day.

Perhaps you may be wondering how my little guy is . . . you know, the reason you all started reading in the first place.  Well, right now, he’s trying out a variety of brooms and mops and swiffers on the kitchen floor (not exactly helpful) while naked.  So, all in all, he’s great. 

We have his first post-surgery scan scheduled for the last week in June, which will involve the usual one-night stay in the hospital for hydration. It’s hard to know what to expect from this one; we will be hopeful, as always, that it comes back clear. They did place a titanium clip inside his belly at the spot where the tumor was removed so they’ll at least know where to focus their attention. The entire “episode” (which is a lovely way of describing those insanely scary three weeks) does indeed seem like a blip on the road to a full recovery. He acts like he always did and always does — silly and wild and full of life.

I took Braedan and Austin swimming on Monday, the first time since before the surgery. Austin knew he had to wait until his scar had healed so as we were packing our bags, he excitedly asked, “Awtin no have canther in tummy? Awtin all better?” Yes, sweetie, Austin is all better.

Mark and I are obviously willing to go forward as if things are as they’ll always be, as evidenced by the idea of moving to a big house and new neighborhood filled with lively friends for the boys.  Of course, we’re not fooling ourselves and know the possibility of another (or a first?) recurrence exists; we know we could be saddling ourselves with one house on the market and another huge one to take care of while also taking care of a sick child. But we just don’ t think it’s worth it to live life waiting for the worst thing to happen; it is not how we operate. We see a golden opportunity in front of us, and the harsh reality is that if Austin’s cancer recurs that’s gonna be awful no matter where we live and no matter what other stresses exist in our life. 

I think a lot abot the way we lived our year between the end of treatment and the “blip”: we lived it to the fullest. We absolutely celebrated what we believed was the end for Austin and for us. We were wrong, of course, and that was crushing. But it wouldn’t have been any easier if we had sat around all year admonishing ourselves, “No, we can’t go to Disney World; he’s not really cured yet,” “No, we shouldn’t laugh too loud, what if it comes back?” That wouldn’t have been right or good or fair, not for us and certainly not for the boys. So we laughed loudly and celebrated fully, we lived as much as we could.

And that is exactly what we’re going to keep doing every single day moving forward.

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