Everyone keeps telling me I should be thankful. So thankful.
You have immunotherapy. He is so strong. You aren’t living in Syria.
Yes. Yes. I know you are right. I just can’t get fully there. I can’t be thankful that Jacob is going through this. He shouldn’t have to suffer like this, but there is one thing.
I am thankful we have jobs.
I am thankful for our work teams as there is a side of pediatric cancer that rarely gets attention. Pediatric cancer destroys everything in its path. It will take away your livelihood. How could it not? Us pediatric cancer parents need to be available 24/7 for years. You are required to be at the hospital by law. A child can’t go to the hospital by themselves. And its not like you sit over here. Its a hotbed of action! Never a moment without a beep! This is serious. You can’t outsource it.
So you will lose your job parent. I know you know this. I bet you already have. I have heard your stories.
You can’t drive a car from a hospital room. You can’t sell makeup at Bloomingdales from the hospital room. There is no way you will be able to hold a job. Even those of you who can distantly dial in, how can you schedule a call at 2:00PM a week from this Tuesday, you don’t know where you will be tomorrow and everyday is Monday.
That reality has been tough to watch. Hard enough to witness your child suffer. Not only does your child have cancer, not only are you living at a Ronald McDonald house because you had to travel for treatment, not only do you have expenses that you could have never foreseen, but you will also lose your job. You lose your identity. You lose you sense of self. You lose your income to provide for your sick child and the other children of yours who are just swept up in the wake of cancer.
Cancer kills everyone in its path.
Steve told me that yesterday someone posted on the neuroblastoma page that they had to travel out of state to get the treatment and once that happened (unknown to her) her insurance wouldn’t cover it and after her child died she got a bill for 100,000s of dollars. She has no job (obviously). She has no child. And now she is debt that she will never get out of.
This is NOT okay. Medicare for all I know support. Just googled the candidates that support this. I was already off team Biden, now I really am. I know he has “other plans” but I don’t accept anything other than 100%.
But we are lucky. We not only have jobs that we can still do, but we have a work family that brings more than just support. Our in particular deserves a shout out. Lux invests in the future. Whether that means the future of driving, the future of design (3D printing), the future of robotics, or the future of Jacob. They exist to make sure we exist and boy have they stepped up. Thanks to Lux Steve’s life was saved by a robot that did his surgery. Thanks for Lux and the incredible work they do, we have been able to speak to scientists in the field.
So thank you Lux.
In latin lux means light and that is exactly what you are. A light for us in this dark tunnel that shows a way out. Thank you for the support. Thank you for allowing us to have our dignity. Thank you for the love.
(And thanks work wife for keeping tabs on him. You know who you are!)
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