The Gift of Summer
I want to echo the words my mom expressed in her comment yesterday: Thank you all so much for your thoughtful consideration of our situation and for caring about us all so deeply. It is powerful and moving to know you’re out there rooting for us, hoping for us, feeling worried and saddened and relieved and happy on our behalf.
We both feel like a huge weight has been lifted, not only the weight of deciding but also (and especially) the weight of treatment. It’s not like we’re riding off into the sunset without a care in the world or anything. Obviously, we still have Monday, which is huge (I mean, how much would it suck if something showed up after all this agonizing? Ugh, I guess that’s a fear we’re gonna live with for a long, long time.) But even if those tests come back clear, we’ll still be very closely watched, whether for cancer or for kidney failure. We have an awful lot of land mines yet to dodge before we can truly claim victory.
But we also know that there’s no point in making this choice if we’re not going to enjoy it. So we feel a little more relaxed, excited for short summer trips to Chautauqua, a sense of freedom and eventual swimming. Tonight the boys are sleeping over at their friends’ house together, a first for Austin, who is very pleased with himself. This sleepover, however, is only a consolation prize because they’d both been eagerly anticipating Breadan’s first sleepover at the hospital, scheduled for tonight, and were disappointed when we told them we weren’t going! Ha, I suppose that’s proof of what a good job the hospital does in making the experience seem fun.
Tomorrow, as the temperature climbs toward 80, Braedan will have his first lemonade stand, for which he’s been busily making posters. Stop by — we’re on Wellington, just north of Fairmount; he’ll probably start around 11. I wish I could report that he was raising money for some worthy cause but he really just wants enough to afford his own “spark scooter.” I guess that’s worthy in its own way.
So, we feel as if we’ve suddenly stumbled upon a summer, one that seemed elusive just a week ago. It is a huge gift and you know we are going to make the most of it. None of us knows what tomorrow will hold, my family least of all, but we will take these moments and we will fill them with as much love and laughter as we possibly can.
I know we cannot be fully relieved yet but I am happy for you guys. See you tomorrow at the lemonade stand and I hope you and Mark enjoy your full night off tonight!!
Depending how long the stand is in operation, we may stop by! We have actually two recitals to attend Sunday afternoon, but maybe we can leave the house a bit early for the first one and stop by on our way out.
that’s what miracles are. stumbling on unexpected summers. I’m so relieved with you.
This is actually wonderful news – it just takes the weight off your shoulders trying to figure out what to do, in this absolute maze of options and contingencies. What a lovely gift for the summer. I’m praying the scans will be clean on Monday…. and thereafter. Here’s something to think about – not today, not tomorrow, maybe not even next week, but something to think about in the next few weeks … with the full expectation that tomorrow’s scans will be clean. Remember a while ago I mentioned that there are private companies who will test your cancer cells against whole arrays of drugs to find out which ones may treat your particular cancer cells – definitely the way treatment will be done in the future, and is being done already in some places here and in Europe. You couldn’t do that with Austin initially, because the whole process takes time, and we couldn’t do that with Abby either, because of the time factor – there’s something to be said about getting in there and starting treatment as soon as possible, even if it’s the sledgehammer approach. But now you’ve got some time – why not see if you can find a company that will do this – so if those nasty little cancer cells rear their ugly head again, maybe you’ve got a secret weapon in your back pocket – a rational, secret weapon – just in case. I don’t know where these companies are – I have an old list that’s probably outdated, and there are probably better ones now. You could start by asking Austin’s oncologist about it – see what he has to say – then we can always look on the web and see what we can find – I would guess they can use frozen tissue samples (hope so). Again, not to overwhelm you more with “to do’s” – but just something to think about – maybe a safety factor – if the need should arise. But of course I’m praying that need won’t ever arise ….
Barbara
I’m so glad…never one to tell anyone else what to do, never one to foist my opinion on anyone, especially something like this, but I was and am rooting for stopping treatment.
I stopped. There came a point, when I was preparing for a stem cell transplant, when my blood counts were way low and wouldn’t recover and they tried and tried, but couldn’t harvest my stem cells and finally I said, “I’m done.” So, “knock on wood,” and may your miracle happen.
Thinking of you today.
Jennifer