Cancer sucks, no way around it. I was with a very good friend this weekend, who is as close to cancer as I am (her mother is fighting her third round and it is incurable) and I said to her there has to be a cure on the horizon, she said there will never be a cure, I said even for two year olds, that makes me so sad, two year olds should live, look at Con, so innocent and a gift from god. I will spare you the details, but in round three spanning almost 40 years, I get all her points and hate to say I agree for the most part (still believe in a cure for Con because he is special resilient, and 2) in that time while there have been many advances in certain adult cancers, none really have been made for the 2 year olds (unfortunately 2 year olds don’t vote and it is “rare” so parents don’t make enough noise or donate enough until it happens to them) At the same time I had also been thinking a lot about how you pay it back, so many people have done so many downright amazing things for us and my entire perspective on life has changed, doing frivolous things mean so little to us at this point, vs doing something with meaning, so I keep thinking about what charity do I want to throw my entire spirit into when I am done. I keep trying to research the childhood cancer ones, find one that speaks to me (and would find the cure, although we are light years from that) because while I do plan on working full time I am not sure I have it in me or the time to start one of my own, and I never find a perfect fit. So my mind keeps going to other places, why does it need to be childhood cancer specific, or even cancer specific (don’t get me wrong cancer sucks and the level it sucks you will never understand before you live through it, but I am sure so many other things suck that I have no understanding of) the answer is, it doesn’t, sure what we are going through sucks, but you know what life is handing lemons to all sorts of people for all sorts of reasons, and I need a charity that cares for everyone! That charity for us is Heartworks (http://njheartworks.org ), if you are in the bville area please join, I know I can not wait to join as soon as this is behind us. When people ask where Connor got his iPad, I say we never asked for one, it showed up, it was an act of kindness from a wonderful charity in our town, doctors, nurses, fellow parents can not get over it. I will never forget Con’s last day at Hassenfeld, it was a little boys birthday, he was turning 8, and was diagnosed a month before Con, sure his treatment was easier, no inpatient stays, but his tumor was inoperable , his single mother was a nurse, making her schedule around his clinic visits and his tumor had not shunk, it only remained stable, she was told that was good, and it is. Child life came out with the presents, all he wanted was an iPad (I immediately showed the mom a charity she could apply to that give childhood cancer patients iPads, but it dawned to me I did not even have to ask or do any leg work, ours just showed up) it made me realize how lucky we are and how heartworks needs to grow, my 2 year old had one and honestly we could have not made it through the 70 hospital days so far and the 90 coming without it, I did not even know we needed it. That is what they are about, they have taken the thinking out for us.
Since then heartworks has done too many things to mention, but today was incredibly special. We were finishing off our “week off”, we probably won’t be off now until Con is finished (which is not until December and means Thanksgiving in the hospital with Claire not being allowed to visit) and Casey and I were both sad, I would be leaving him with the twins for Boston and radiation including Con’s brainstem which scares us more than words could explain, and when we got home there was a package from heartworks with a drawing toy for the kids, but also a membership to the children’s museum in Boston (a place we planned on spending a lot of time) along with restaurant and first hand recommendations for things to do with toddlers, and a gift card to enjoy it all. Both C and C could not get their hands on the drawing toys fast enough and Casey and I were left once again stunned that we live in such an amazing town with such amazing people that we have never met, lifting us up every step of the way, for that we are so incredibly thankful, and can not wait for our “good days” to pay it forward!