Life moves so quickly sometimes. I thought while I was in New York I would carve out time to blog, but we were so busy I didn’t. And then coming home I have just been trying to get the house stuff and kids in order.
So for those that don’t follow on Facebook (and if you don’t you should!) Tony, Bridgette and I went to New York to give money to a few labs as well as meet with additional ones we are considering funding and a few other East Coast foundations.
I went through a lot of surprising emotions on the trip.. Just even being there was bittersweet. Its always been a dream of mine to visit New York. But we chose to have me be a stay at home mom and figured there would be no reason to travel that way for a long time. Then Jennifer got sick.. and there was a trial .. something to give us hope in New York. We tried to get into it and did, everything was set for us to go.. Just had to do her first post treatment MRI and get those results.
But .. those results didn’t go as planned. This is still one of my favorite blogs .. I remember the clinic we were set to go to at Sloan Kettering calling.. I remember going back to my bed to take the call in private. I sat on Tonys side.. I remember exactly the place I sat.. legs crossed underneath me.. Clutching Jennifer’s beloved pinkie bear that she had left from the night before.. Hoping beyond hope that maybe when I told them they would say we still had a shot.. that somehow we could get just a little more time with her. ..
They didn’t. But I will never forget how the clinician took the time to speak with me.. mom of “dead man walking” .. Not a patient of theirs.. just another DIPG case.. But they took the time to speak with me. I will never forget that.
New York then morphed into a symbol of lost hope. Of no hope. The truth of DIPG.. and of our story. I grew to hate it.. resent it..
But then came Ty.. and Kylie and Ryley. And the events we did in their honor with the money raised specified for Neuroblastoma. . I knew then it would be Sloan Kettering I knew then it would be New York. We ended up with Dr Cheungs lab. I spoke to them. They invited me to come see them. . maybe one day I told them.
Then came Sawyer. Burrkitts Lymphoma. I knew it would be hard to find a lab researching that. But I also knew our scientific advisor would find one. She did. Dr Roth. .. Weill Cornell. .. New York.
.. and I knew then that I was supposed to go. To push past my bitter and my jealous. ..
It felt like a betrayal to her. From that moment after the phone call on my bed when I said “fuck you New York. I will never go without her. fuck you” – Cancer brain.. child loss brain isn’t always logical but it is sharp and it cements certain things. This newfound hatred was just that.
Somehow though I knew. This was where I was supposed to go. What I was supposed to do. ..
thank you jennifer. for the push. for Ty and for Kylie and for Sawyer..
We made the most of the trip.. site seeing and eating (it IS New York after all) as much as we could before and after appointments. And planned for 2 days for us there as well…to be tourists and husband and wife. We only took Bridgette with us and since she is so portable we could do what we wanted.
We only ate at the same place twice. Every other meal we made sure to find a new place to eat. But Tony was oddly insistent that we skip by all the places we saw to return to this one cafe we had been to. It wasn’t anything insanely special.. but he just really wanted to go there again.
One of the employees, a young man, came over to us on his way to break to say how cute Bridgette is. We got that a lot!! And he ended up chatting with us for awhile. Our reason for the trip came up and he shared about his life. How he had lost his brother as a young boy. How his family came to United States in hopes to save him. .. America offers hope and promise to other countries and New York is the gateway for so many people. It made me think of how I often only give stats from this country and our children dying and getting sick. But the thing is our responsibility is so much deeper. We have the minds and the resources.. Which means we also have the responsibility.
Worldwide 250 children die daily from childhood cancer.
Speaking with him.. hearing that hope his family had in us. In our country.. it sunk in, that truly it is so much bigger than I ever really realized.
We had just met with Dr Roth and I thought how perfect that was. .. (I am not a scientist so this is my best attempt at understanding and explaining this disease. ..side note, this is also why we have a scientific advisor!)
Burkitts is typically seen in Africa and is unique because it is common in young children who also have malaria and Epstein-Barr. Her time in Africa is what lead her to want to research and treat Burkitts. So the advancements we are able to help her make will stretch far beyond our shores.
Kids like Sawyer are what continue to motivate her. She knew all about him.. I think honestly even more than I do because she truly cares.. she truly allows herself to become invested. And it motivates her to fight for kids like him that can fall through the cracks; because its a rare cancer.. because its got a good survival rate. .. But if the initial treatment doesn’t work then these kids and their families are left with no real options. But they are more than that. More than just a number or a statistic.
She was so grateful to get a donation directly from people who love Sawyer and donated to his honor page and from our upcoming Sacramento MNO. .. thats right they have already raised enough money for us to give her a sizable check (not telling how much until the event though 🙂 And through meeting with her we were able to help facilitate a connection with her and another lab we support that can be a successful collaboration…
As this young man took our brochure and put his hand on Bridgette to say goodbye he knelt down to her and said “nice to meet you Jennifer“…
My jaw dropped and I told him that wasn’t her name it was Bridgette and he started to apologize but I told him that was the name of her sister the one that sent her to us .. we all stumbled over a goodbye after that.
I sat there in silence looking at my husband across the table.
Before we left I made a quick run into the ladies room and as if all of that wasn’t enough.. I looked up and saw her name…
I was right where I was supposed to me. Doing what I am supposed to be doing. ..
i kept my promise
you made sure of that..
i did new york baby girl.
…until there is a cure..