Second Worst Day of My Life

The first being when Con was diagnosed and sadly the third the traumatic day the twins were born much too soon. Connor will be having surgery Tuesday first thing in the morning, today I got the first honest assessment since the tumor was found. First, only 50 percent of the tumor was resected, not 75 percent like we thought (good survival rates are associated with 85 percent to complete resection). Second, because of it’s location it will likely never be totally removed by surgery so our best bet is to go all out with an aggressive surgery and shave near the brainstem and get to a point where there is “minimal disease” and hope consolidation chemo (high dose) with the stem cell transplants can zap the rest so that Con is stable until his his third birthday at which time we can do targeted proton beam radiation. The surgery has lots of risks, I am sure these risks are not very different than our last surgery, but we did not hear the risks last time because there was no point, the risk of not doing surgery was worse, death. There is a 3 percent chance he will be severely disabled, I.e. Paralyzed, not being able to breath without a trach, etc. there is a 10 percent chance of a facial palsy or that his eyes won’t track properly, both of these can be fixed with future surgeries if he beats the cancer. There is a 15-20 percent chance of transient cerebellar deficits which with therapy should correct themselves within 2 years, but it will make a rough time rougher. I focused on the 3 percent, told him that was a bit too much for me to stomach, he said most people focus on the 97 percent, those people have not had lightening strike them twice already I guess. Ultimately I spoke to our oncologist, cried a bit, and said I can’t lose his personality, or if we are talking about extending his life a year with deficits vs him being him for 3 months I would take the 3 months. Even with this she recommends surgery, she still thinks cure is possible but that there is a zero percent chance without surgery. So like that Connor will go into surgery with two very nervous and scared parents on Tuesday who will just pray he wakes up with that sweet smile of his.

In other bad news we harvested enough stem cells for a little over one transplant, we need enough for three but the line that was placed for the harvest stopped working during today’s attempt so we are on our way home with a kid who has a great white count and could have likely produced enough stem cells for his last two transplants disappointed because we will need to have a redo after his next chemo cycle, the inpatient days are just piling up, for anyone counting we are up to 49 nights I think.


7 thoughts on “Second Worst Day of My Life

  1. Oh Erin. I’m so sorry today took second place. I respect and hope I would also keep having conversations about quality of life. That said the team seems to be saying a cure is possible & it is worth it. Not their choice, but good to hear their thoughts. Those stats are the worst to hear because there is a chance & you absorb every single 1/2 percentage chance because it is about your baby boy and what happens to him. I can only imagine the disappoint piled on by the stem cell retrieval.
    I will be praying for you in so many ways, and will keep it simple for Connor: that he keeps keeping that smile of his. Huge hugs. ❤️

  2. They say God doesn’t give us more than we can handle, though I guess that is hard to believe after a day like this. Just try to remember how many people are out there pulling and praying for Con and all of you. If there is power in numbers, you’ve got that going for you. You’ve all been so incredible. Praying for you and Casey to keep finding the strength you need.

  3. My heart is breaking for all of you. I will continue to pray that you get yet another miracle with this next surgery. Love, hugs and prayers that sweet Connor pulls through with that sweet smile on his face!! ❤️😍😘xoxoxoxo

  4. Try and keep the faith! Connor is a fighter and has so many people in his corner. There is not a day that goes by where thoughts and prayers aren’t sent his way. I am confident he will have a bright and healthy future. Xoxo

  5. I believe your twins are miracles and miracles beat all the odds. Praying for your family every day during this impossible time. Stay strong and know how loved you all are!

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