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Not bad at all.

We just completed what was undoubtedly the best year of Austin’s life. The only year of his life, so far, without hospital stays (those few overnight hours in the ER in Junein the ER were nothing). The only year of his life, so far, without surgery. The only year of his life, so far, without any significant health problems: no diagnoses, no recurrences, no major medical drama.

And the first year of his life, so far, in which he was nothing but a normal little boy . . .

Just a regular kid …

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Dancing (I think that’s what they’re doing) …

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Riding…

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Shaving …

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Celebrating …

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Skiing …

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Rescuing …

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Snuggling …

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Hunting …

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Learning …

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Snoozing …

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Fielding …

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Beaming …

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Hiking …

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Avoiding …

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Crashing …

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Big wheeling …

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Hot tubbing …

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Boating …

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Monkeying …

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Field tripping …

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Blasting off …

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Dressing up

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Living it up …

To many, many more ….

We have been buried in the flurry of holiday activities lately. Shopping and wrapping, addressing and mailing, baking and baking and eating and eating. The boys and I baked a holiday breakfast of muffins and breads and fruits to deliver to the Oncology Floor recently. (There was no blizzard-induced walk home after this one, thank goodness.)

That same day, we were entertained by 120 first and second graders singing their hearts out in their production of “Flakes,” a very sweet song and dance concert in which each second grader recited an individual line.  Below is the one and only Braedan, whose pretty face is hidden by his snowflake cap. His part came in the middle of a story line about how each snowfake is different, even though, at first glance, they all look alike.  The other kids had lines like, “Some are very short and some are very tall, Some have lots of hair, others none at all.” But no line was so perfectly suited to its child actor than Braedan’s:

(Having a little trouble with the technology here — will fix on Monday.)

In case you weren’t able to understand him (even though he was the most understandable of the bunch!), he said, “Some of them are singers, others like to dance. Some would play golf every day if their spouse gave them the chance.” What you don’t get in this video from the afternoon show is the appreciative laughter of the parents at the evening show.

Thursday, we celebrated his birthday at school with mitten cookies, a reading of The Mitten Tree (a truly lovely children’s book if you need a new one) and some mitten measurement. Friday, the parents hosted a second grade brunch in place of a traditional class party since there were two assemblies in the afternoon.  We made a zillion pancakes and waffles, with the help of a lot of extension cords, and were thankful that no one brought unasked for candy and cookies.

And today, my Braedan is eight and the real whirlwind of the holidays is upon us.

So, we’re busy and more busy and busier yet.  But we do take the time to appreciate what we’re not doing this holiday season: We’re not juggling visits with family around visits to the hospital. We’re not choosing presents that are only appropriate for use in a hospital bed. We’re not frantically canceling family vacations. We’re not dazed and exhausted and wondering how on earth we’ll manage to play this damn cancer game any longer.

We are not sad and afraid and worried. We are not sick.

We are, instead, this:

Merry and bright

Happy Everything from all of us to each of you.

May seems an awful long ways away right now, as I look out at this winter wonderland, layer upon layer of snow and ice covering every visible surface. But May is the next time we’re scheduled to go to the hospital. Three months away!

Everything yesterday was fine. His chest CT was clear and the abdominal ultrasound showed no changes from the last time. His creatinine held steady at its new December low and his hemoglobin jumped up in a big way. The hemoglobin thing is pretty significant, here’s the medical scoop: Chemo obviously destroys blood cells and the body’s ability to produce new ones is often slower than a scheduled chemo regimen, leading to inevitable blood and platelet transfusions during treatment. Once chemo is stopped, the patient’s bone marrow should slowly but steadily produce new blood cells and “refill the coffers,” until they reach a normal level. This has  happened for Austin in terms of white blood cells and platelets and neutrophils but not for red blood cells, as measured by his hemoglobin.  We believed the reason for this was twofold: 1) the kidney produces something called erythropoetin which makes red blood cells, so we assumed his wasn’t doing that (or wasn’t doing it quickly enough) and 2) he was spilling red blood cells into his urine, again a sign of weakened kidney function.

So we’d been planning on blood transfusions well into the future, as often as he needed them, which last summer was every four to six weeks. Well, his last transfusion was in the end of August! In November and December, his hemoglobin was low but not quite low enough to necessitate a transfusion. And yesterday, it had risen by an entire point to a number that is two-tenths of a point away from normal!

That kidney is indeed recovering.

Even his blood pressure was down, always a huge relief. So we carry on, three more months with no hospital visits, three more months of health and growth and recovery. Working kidney, cancer-free … what more could we ask for?

Springtime would be nice!

Ah, somehow this boy keeps surprising us all. And this time with good news.

The lymph nodes came back clear, negative for cancer, which is the best possible outcome we could have received. The tumor that we originally went in for was Wilms’, but it looked similar to typical Wilms’ tumors after they’ve been treated with chemotherapy. This means it’s possible that this particular tumor is not a recurrence at all but was actually in him in some form during treatment. We’ll never really know if that’s what happened or not and it doesn’t impact how we’ll move forward but it would change the survival statistics, which happen to be pretty dismal for recurrences of Wilms’ tumor. (I will talk about that another day because right now I’m just too pleased.)

The other mass that we were afraid was a lymph node infected with his cancer turned out to be a tumor but not a lymph node at all. Again, no one is sure why this happened but it may actually be a part of the larger mass that sort of came loose, as they were found together in a net-like sack. It is, as usual, very unusual. But unusual we will take.

There’s still a possibility that we may do one six-day course of radiation, but we’re waiting for the St Jude’s people to weigh in again. Then we’ll have to think long and hard about the risks versus the benefits. The fear is that we still don’t know what else might be in there or what might appear another year from now. 

But we’ve learned to take things one day at a time and today is a very very good day. Today we exhale, today we celebrate. Today we look to the future together.

Last night as we were leaving Braedan at my parents’ house and were all standing around hugging and saying long goodbyes, my dad and I hit upon the realization that today could be the day that we finally rid Austin of his cancer.

Today is our day.

Here we go again. We’re packing our bags, bringing Austin’s comfy pillows (which are so much better than the plasticky ones the hospital uses) and all his lovies, who he refers to as “my guys.” His guys include, among other assorted stuffed animals, Cookie Monster (“Cookie Mah-mer”) and Koala (“Kah-wa-wa”). This time we also have the single-cup coffee maker from Mark’s office, which will make mornings so much more pleasant —  trying to carry a recovering toddler attached to an IV pole and a hot cup of coffee down the hall always ends up a tragi-comedy.

We’re feeling pretty good about this, although it carries with it all sorts of risks.  Because it is a major surgery, they have to use those lovely words that my ears have heard too many times: “potentially life-threatening procedure.” But he is in excellent hands and we’ve done this before, so I nod my head and sign my consent yet again. There is also the possibilty that what they find when they open him up is worse than we thought and they end up removing the kidney as well. Austin would then begin dialysis and wouldn’t be eligible for a transplant until he’d had two years of clear scans. As you might imagine, you don’t want to stick a nice new organ in a potentially cancerous cavity. I try not to think too much about this as it is pretty unlikely to happen tomorrow and the thought of just beginning something so horrible after all we’ve (he’s) already been through is almost too much to bear. Almost.

We’re due there at 6am and surgery is set for 7:15. Mark and I will then wander around the hospital for hours on end, flipping through old celebrity magazines and checking email on our his-and-her iPhones.  If all goes well and we can avoid the PICU, we should be back on Rainbow 2 by early afternoon, settling in for a one-to-two week stay.

Austin. Cameron & Braedan, getting ready for their early egg hunt

Austin, Cameron & Braedan, getting ready for their early egg hunt

 

Baskets still empty...

Baskets still empty...

 

Happy hunting

Happy hunting

 

Braedan and his favorite cousin, racing about in their pajamas

Braedan and his favorite cousin, racing about in their pajamas

 

Look what I found!

Look what I found!

Showing off his jelly beans

Showing off his jelly beans

Mission accomplished

Mission accomplished

 

So now is when I ask you to start wishing and hoping for my little Austin. You probably notice I don’t use the word “praying” even though a child with cancer must be what prayer is for. But it is not what I do. As I’ve said before, I am not a religious person and that is a very gentle way of saying that I don’t believe in God and never have and don’t imagine that I ever will. But I understand and respect that faith is where many of you find strength and comfort in times like these and I certainly don’t hold that against anyone.

I take no offense to whatever well wishes you want to send Austin or send up or send wherever. In fact, I am honored and touched by them. You can say Jewish prayers and Muslim ones, Christian, Hindu, Buddhist, it doesn’t matter to me. You can light candles or recite rosaries or dance under the full moon. I don’t know if any of it works, but if it makes people feel a little bit better, then that’s okay with me.

Mark was raised Catholic and although he is not practicing and we didn’t baptize our kids and he never takes me up on my annual Christmas Eve offer to go to church (I like the music), he still believes. I’ve never seen him down on his knees, but I am certain that he prays for his Austin. And I too offer up my wishes in my own way, usually by finding a bright star in the sky. That makes me feel a little bit better too.

So do what you need to, do what you can. Maybe all these wishes and prayers just float around in the universe, never making it anywhere, but I think the positive energy must be worth something. And it certainly can’t hurt.

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