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In this household, every day is a day of thanks giving. Not that it’s all hand holding and laughter around here (I say after sending the kids to their respective rooms so I can cook for five minutes without breaking up fights), but we are endlessly and eternally thankful for all that we have.

First and foremost, I am thankful that every time someone asks me how Austin’s doing, I can report that he is X months cancer-free (now nineteen) and can add, “the longest stretch without cancer in his entire life.” And I am even more thankful that each time I say it, he’s one more hour, day, week, month cancer-free.

I am thankful that, deep down inside, under the layers of resentment and rivalry, my boys love each other with intense ferocity (and that they still dress alike voluntarily!).

I am thankful that Braedan is earning a reputation as the boy who says Thank You.

I am thankful that both Mark and I still have both our parents in our lives.

I am thankful for a marriage that is, as marriages go, relatively easy: one filled with mutual respect and comfort and support and encouragement and laughter and love. And that in addition to taking care of the lawn and the shoveling, he’s also been known to clean the toilet or mop the kitchen floor, without being asked.

I am thankful for delicious food — yum.

I am thankful that I can do 100 burpies in a row without stopping.  Ok, I’ve only done that once and I didn’t like it very much, but I’m still thankful I’m capable of it.  (And if you don’t know what burpies are, be thankful for that!)

I am thankful for the extremely mild weather we’ve had this November.  Yay for sunshine — we Clevelanders totally deserve it.

I am thankful for strong coffee, good wine and an occasional glass of cold water.

I am thankful to all of you who keep coming back and reading my so-called cancer blog, even when I focus more on the mundane aspects of parenting and home remodeling more than the life and death aspects of childhood cancer.

I am thankful to no longer share my house with an endless stream of random laborers.

I am thankful for dresses with pockets so I have somewhere to hide my insulin pump.

I am thankful that the voters of Cleveland Heights and University Heights stepped up despite tough economic times and supported public education.

I am thankful to have so many venues in which I feel comfortable speaking up. And I am thankful that my voice is often heard and listened to.

I am thankful for brothers who challenge me and love me, even if they don’t always agree with me!  (Which is strange since I’m always right.)

I am thankful for friends to laugh with and cry with and share all of life’s important and unimportant moments with.

I am thankful that we have only spent one single night –and not even a whole one, really just a few ER hours — in the hospital over the past year. And I’m thankful that one day, I know we’ll be able to say we’ve gone an entire year without a single hospital overnight.  (Austin deserves at least one year like that is his life.)

I am thankful for the scientific research, modern medical technology, and brilliant doctors who saved my child.

And I am thankful for the kindness, caring and love that saved the rest of us.

I am thankful for today, and I am thankful for tomorrow.

Thank you.

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.

People keep asking me and Mark how we feel and the honest answer is that we just don’t know yet. This is all so uncertain, things seem to change so drastically so quickly and until we have something more definitive than we have right now, we just aren’t committing to any particular reaction or emotion.

We feel sad, for Austin, for Braedan (who, if he hasn’t felt abandoned up until this point, probably will now — ha, cancer humor), for us. We feel scared, angry, worried, hopeful, resigned, frustrated, tired, bewildered, numb. We feel everything all at once and we feel nothing at all.

We will wait until December 10 and in these two weeks, we will carry on as normal, going to school and on outings, painting together at the new house in what has become a family labor of love, Austin with an endless array of colors in his hair. We will cook and bake and eat on Thanksgiving and be thankful for all that we have. And we will wait until that next ultrasound to see if this new little thing has indeed grown.

And if it has grown, then we will assume it is cancer, because, really, what other small round hard object is going to appear out of nowhere in this boy’s kidney but cancer? The dilemma of the past month will be irrelevant and we will do whatever we have to to get it out of his body and make sure it never comes back.

And if it hasn’t grown, the great hope of the moment, we will go back home (to which house, we’re still not sure!) and buy our Christmas tree and decorate it, and celebrate yet another holiday all together, happy and apparently healthy, and be thankful for all we have.

And then we’ll do another ultrasound two weeks after that and then a scan in mid-January and we’ll go as long and as far as we can until we have a reason to change course. And if and when the time comes that we have to take that kidney out, then that’s what we’ll do and we’ll move forward with dialysis and learn a new set of terms and adopt a new diet and meet the new nurses and we’ll be thankful for all that we have.

February 2020
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February 2020
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