I meant for this to be posted yesterday (March 1st) and then I became all overwhelmed by needing to go to a speaking engagement for Lurie Children's (see? I had a good reason! See?) and I didn't get it done. My most sincere apologies to MTM!
Immediately after my son was diagnosed with a rare, fatal liver disease called Biliary Atresia…as I was walking, dazed and bleary-eyed to an elevator that would take us to admitting and then to our hospital room…in the late afternoon of a day that began with my firm belief that our son was healthy and this doctor visit would be routine…the Hepatologist left me with some chilling words.
He said “I know…(referring to the horrified look my face was frozen in) This is one of those times when you don’t want to be unique (referring to the very rare disease my son had just been diagnosed with.) This is one of those times when you wish for something you’ve heard of – even if it’s scary – because if you’ve heard of it, it means we have a better idea of what to do next.”
(He was referring to cancer.)
First of all, there probably couldn’t have been a WORSE thing he could’ve said to me at that moment. I don’t know why he thought that was a good idea.
More importantly, it’s not true. It simply isn’t true.
My son had his transplant three months later and his biliary atresia is gone. It will never come back. Sure, there’s a list of post-transplant fallout a mile long that includes acute or chronic rejection of his new liver, irreparable kidney damage from the meds (possibly leading to kidney transplant), and the two types of cancer that transplant kids are more likely to end up with because of the anti-rejection meds – melanoma and PTLD (post-transplant lymphoproliferative disease – a special type of cancer reserved for transplant patients – caused by the virus that, for you and me, causes mono.)
The cancer possibilities are, by far, the scariest for me.
My new normal really is just normal for me now. I don’t panic every time Pip has a blood draw or an ultrasound. I can tell he’s pretty darn healthy. I can’t imagine ever achieving that peace if the results we were waiting for involved whether or not there is cancer in his little body. Because it is invisible. And it is ruthless. And sometimes it has come back and you don’t even know it. It’s a monster. I watched it take my uncle and my father. It is truly a beast. An invisible beast.
I was at a water park two summers ago. Pip asked to be held because he was chilled and, when I picked him up, there seemed to be a brand new angry-looking mole on his back. I rubbed at it with his towel and it stayed. The next few hours were a blur as I panicked and wrangled the children and called transplant nurses and dermatologists and tried to get an immediate appointment and cried and showered children and packed them into the car and drove the 45 minute drive to the dermatologist’s office to demand he be seen without an appointment. Because I was just sure he had cancer. And because I would rather face another transplant or two than the beast that is cancer. And because I would do anything for him. Anything. ANYTHING.
By the time we arrived at dermatology, the blemish was gone. No idea what it was. Clearly not cancer. Maybe a little piece of a pb&j? I have no idea. I’m such a freak.
I try to forget that day – but I can’t. It was the one day my son had cancer (in my mind) and it was horrible. Terrifying. Having it confirmed by a doctor, living it for a second or third day, would have been unimaginable. Living it for years…losing him…I can’t even go there.
But there are families who are there right now, of course. And there are families who have lost children. It will happen again today. Seven children will lose their lives to pediatric cancer. It is the number one cause of death by disease for children. But only 5 percent of cancer research funding is allocated to pediatric cancer research. How is that possible?
My friend, Mary Tyler Mom, lost her beautiful 4-yr-old daughter, Donna, to cancer. She has written bravely and poignantly about Donna’s Cancer Story and she and Mary Tyler Dad continue to be great parents to Donna by tirelessly advocating for more pediatric cancer research funding.
And on March 30th, they’ll be hosting a St. Baldrick’s event here in Chicago at the Candlelight to raise much-needed funds for pediatric cancer research. I’ll be there. I will not be shaving my head as I am a gigantic chicken. But I’ll be there because I have a son whose life was saved by doctors who can remember a time when pediatric liver transplant wasn’t an option and his disease was a certain death sentence. And then research was done and procedures were perfected. It is AMAZING what they can learn to fix. They can learn to fix pediatric cancer, too. They just need some support.
We can do that.
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