The rest

If my world (outside my family) could be summed up in a picture this would probably be it (minus a photo bomber, and I know a few people are missing so I apologize):


Today, Claire handed me this picture, it has to be 9-10 years old, no idea where she found it. For those that don’t know, I have no idea who the guy is, but the rest of the people are my number 1’s and a lot of the reason I can still stand on two feet throughout all of this. They are my best friend from high school, Michelle, my best friend and roomate for 8-9 years from college, Kristin, Mama Meg, and our “third sister”, Lauren. The fact that Claire handed me this picture today was just so special, I had to share, it ended an already awesome day, thinking about the people in this picture and those not pictured who got us to, today! I am blessed to say that 10 years later and almost 20 years if not more of friendship, every single one of these people are very much part of my life today!

Anyways, I digress, I need to update on the rest of today. We arrived at Hassenfeld knowing the MRI had been uploaded (I confirmed before we left the MRI suite) and took our time getting there, it was beautiful out. When we got there it was empty so we were able to bring the shopping cart back (if anyone has the Melissa and Doug shopping cart they want to unload please let me know, we have three but not that one and have finally decided I need to get that one for the hospital, he loves it so much), we did not want him in playroom because of last night, but he got cleared the ear infection is all but gone (the antibiotics are not the “bubblegum” antibiotics everyone else gets, they are hardcore kill everything antibiotics in a half hour that only cancer patients get) so it ended up being no big deal. We drew labs, changed his dressing and mommy got taught how to flush his lines 3 times a week. Then we waited, only about 10 min. I called Meg to hear about Claire’s amazing day with her cousins (Cousin Joe braved it with 6 kids this morning so “mama meg” who has basically been working full time this week setting up her classroom and caring for Claire and Jimmy could get a pedicure, thanks Joe, you are Super Dad), and got cut off 5 minutes in because in walked Dr. G., we first covered the MRI results (there was even an official report which was incredibly quick to get meaning his scan was crystal clear with no room for interpretation, typically you don’t get report same day), then we covered the rest.

So first, even though today is the best news ever, I need to caution everyone. Connor’s cancer is still very rare. It has been published three times we can find, the first time 30 years ago, 30 people, zero percent survival. The second time 10 years ago, 1 case, referencing the prior study, zero percent survival. The last time, 5 years ago, a 5 year old 36 months, no evidence of disease, and we don’t know what happened but assumption is she is living a happy normal life. So we took her protocol and intensified it 10 fold because the younger you are the more aggressive the cancer is, so our hope is, this is the answer. While today’s news is awesome and worthy of a celebration, we really get to breath a sigh of relief if the news is the same a year from now. If Con’s cancer is going to come back, the thought is it will come back in the first 18 months, and if it comes back there is not a whole lot we can do. Just wanted to clarify for those wondering why we have such a long hard road ahead of us when Con is essentially cancer free today.

So, the rest of today, even though the white counts were so high we got barely nothing yesterday in terms of stem cells. As a result Dr. G. Thinks we need something in addition to nuepogen. There is an adult drug that is not FDA approved on kids, but lots of studies for use in kids that could be our answer. She walked us through the potential side effects and agreed they were worth it. Then she went off to petition for use, by the time we got home it was not only approved by the FDA but also by our insurance with a slightly higher co-pay ($50), and this insurance right here is the reason why I am on a leave and not Casey, for an insurance company to approve this in less than an hour is borderline amazing, I actually have never heard of anything like this in my life. So the plan is a week off!!! We have to go in for a kidney test next Wed but that is it. Then we start the shots next Fri and our next attempt at retrieval will be 9/9, with chemo starting the week of 9/15. This schedule works for almost all our plans, we have time with the good MRI, it allows us to see Claire off to her first day of school, the only thing it could potentially mess with is my return to work by a week or two which totally sucks because I am craving something non cancer related just for me in my life.

Other than that, this weekend marks the start of childhood cancer awareness month and I hope you will join us in the whipping cream challenge. If you do and are looking for a place to donate your 7 dollars or whatever you are able to donate, I have a recommendation, the making headway foundation. You can do this in Connor’s name (be sure to put this in your donation, they will do their best to tell us everyone who donates) and this charity directly benefits Connor. They pay for things like birthday parties for NYU patients (C and C got one) but more importantly research. They will be sequencing Connor’s tumor just to save his life. Since Connor’s tumor is so rare sequencing it is just for him, it won’t lead to a medical breakthrough or save 100’s of lives because there have not even been 100 cases, therefore a charity like this and doctors that care are the key to saving Connor’s life.

Here is the link, and if you decide to donate, do it in Connor’s name and earmark it for research!


2 thoughts on “The rest

  1. I never commented on your Truth post because I had so many thoughts and couldn’t choose one. Like many people in your life we are hopeful, cheering and praying each day. However we also have witnessed statistics and odds play out for babies around us in the NICU. That means we’ve also cried, been angry & terrified about Connor’s tumor. We know it is in fact a marathon that has just begun.
    Can’t be just a random thing that Claire found this and gave it to you today. I mean she could have just as easily colored on it or hidden it in the cozy coupe, but she handed it to you. So you could smile & remember. Thank you for sharing the link. We always want ideas of how to help.

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