This was a quote I had not heard before, but the social media firm that was covering last nights Hope Bowl (a fundraiser in which Red Sox players bowl with Christopher’s Haven being a beneficiary) had this quote, I chose this one for Con and I to take a picture with for their campaign. We unfortunately did not get to meet any players, think they were too young, and it would have been more exciting for me than them anyways, but the twins had fun running around
It’s no secret, I have been having a harder time in Boston than I ever imagined, there is a lot of time to think up here. Also for the first time I have met and gotten to know other pediatric cancer families, prior to this and after this Con has spent and will spend almost all his time in isolation so meeting with and bonding over a shared journey has not been a possibility. I am not sure whether this is a good thing or a bad thing. Additionally, Con’s situation is so unique that there isn’t a whole lot for me to add anyway, there are three rhabdo’s currently being treated, Con, then two others with rhabdo’s in more traditional places, neck and ear, their protocall is so different from Con’s, so much easier, it started to make me question everything until last night.
Last night, an amazing family came up an introduced themselves to us, they had a spunky 4 year old boy “who thinks he is shy” and the most beautiful baby girl I have ever seen (Con thought so too, he could not stop hugging and kissing her, and the mom was fine with it), they asked us if we were staying at Christopher’s Haven, and let us know they had a long stay there last year for their sons treatment, not the one that was there as it “did not turn out the way they had hoped”, it turns out their sons case was as close to Connor’s as we are probably going to get, and even with it not turning out the way they had hoped they were willing to talk to us and help guide our decisions. Basically, their 2 year old son had a rhabdo in the neck, from the beginning he seems to have had more complications. The tumor impacted his breathing and swallowing so he needed a trach and G-tube early on, she was impressed with Con’s ability to keep on weight and in general how great and full of energy he was. Ultimately, the cancer spread to the brain, specifically the cerrebellum (Con’s tumor location) and that is what ultimately got him. She said he had very few symptoms of the brain tumor, I said that was exactly like Con, he had a 6cm by 6cm tumor in his brain and we attributed his clumsiness to running to fast and being 2, if it was not for being a micropreemie and being followed so closely by so many people we probably would not have caught it until too late as well, that is how scary and aggressive this type of cancer is, on Jan 8th he had a head tilt, by feb 18th he had a 6 by 6 tumor, and was going down hill fast, oh and on Thanksgiving, he was a perfectly normal developing 18 month old. She said since their were no symptoms they continued on the rhabdo chemo protocall and that combination of drugs the thought is were not able to break the blood brain barrier. She asked about our protocall, when I tell anyone up here they immediately feel bad for us, they have never heard of anything so grueling (our doc in NY wrote the protocall) she seemed to 100 percent think it is the right way to go. I felt confident too, I finally understood why we needed to be on the most intense “baby brain” protocall, it reaffirmed our decisions on doctors and hospitals. And for the first time with so many things going wrong around me, amid the darkness, I saw the stars, and most importantly am very confident when people ask about his prognosis and our treatment and look with disbelief, I respond we are very HOPEFUL!
Now we just need a clean MRI on the 29th so we can carry out the rest of the plan!