Five Month Post-Surgery Update on Hannah – remember, September is National Childhood Cancer Awareness Month! #gogold

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Hannah-5thGradeIt’s now been five months since Hannah’s knee surgery, and life for her has pretty much returned to normal. The only visible signs of her experience with cancer are the ever-improving scars on her thigh, knee and calf – and mentally she is SO over her knee being the center of attention. Like any other 10-year-old girl, her focus now is on friends, school and activities – which is exactly how it should be.

And exactly how it was a year ago – it’s been almost a full year since we first noticed the weird growth on her knee last October. So much has happened since then – and yet it also feels just like yesterday… A year ago I’d never even heard of a hemangiopericytoma – and now I can spell it without even thinking about it.

iPhone 001We can’t totally forget about the cancer however – she still needs routine scans of her leg (MR) and chest (CT), so every few months we get to re-visit the now-familiar children’s hospital and go through that process. You can tell that the Child Life (CL) Specialists are more used to dealing with scared kids who don’t know what’s going on – they’re always pleasantly surprised to find that Hannah’s easygoing and a pro by now at everything from changing into scrubs to having an IV put in.

After going through the MRI process four times in less than a year, she pretty much really does have it down. Heck, she had two MRIs just in the past two weeks – talk about déjà vu…

Hannah-1stSoccerGame-Fall2013 046But 90% of the time now, it’s just like nothing ever happened. She’s been done with physical therapy since July and is running around – and playing soccer even – just fine. She’s comfortable enough with her scars that she wears shorts when it’s hot out just like usual without any visible hesitation – although she has told me that she’s getting tired of people asking what happened to her knee.

I pointed out that a) it’ll be getting cold enough out soon for long pants, so nobody will be seeing her knee enough to ask until next summer and b) she doesn’t have to go through the whole explanation every time somebody asks about it.

In fact, she doesn’t have to even tell the truth – my suggestion? Tell people that a Martian bit her on the knee. 😉 She thought that was pretty funny – and immediately started coming up with other fun ways she could answer when people ask.

ToledoZoo-Aug2013 (173)I’m glad that she can laugh about it – although I do worry that the cosmetic part will be a much bigger issue as she gets older and hits teenager-hood and all of the body and self-esteem issues that teen girls tend to have to begin with. Her scars are improving all the time, but her knee will never completely look exactly like the other one again. But for now I’m just glad that she’s not having any lasting effects from it.

We did just finish the latest round of scans – she had the chest CT and MRI very (very) early two weeks ago today. Her only complaint was with having to get up at 5:30am – I couldn’t blame her there because I certainly wasn’t thrilled either. And I was even less thrilled (and more nervous) when we got a call the following Monday that she needed to come back in for a second MRI because they wanted to get more pictures lower iPhone 003down on her leg. THAT had me a nervous wreck (which I kept to myself) until yesterday’s follow-up appointment when we got the all-clear for both the MRIs and the CT that there’s no evidence of disease in her leg or lungs (this type of tumor typically tends to spread to the lungs, if it does spread). Just ‘normal’ post-surgical change in the leg tissue, which was a huge relief.

After a detailed exam and lots of questions and answers, the doctors are very satisfied with how Hannah is doing – and she doesn’t need the next round of scans for another four months, which means that we should be done dealing with this for 2013.

iPhone 012It’s been a long year in a lot of ways, and I think our whole family will be happy to welcome 2014, hoping for a nice quiet year with no extra drama – or hospital visits that aren’t routine.

Yes, 2013 has been difficult – but we also know it could have been a lot more so, and feel so completely blessed that the cancer hasn’t returned or spread. Every set of scans gets Hannah further and further along the path to the final all-clear.

Please take a moment to hug the kids in your life  – September is National Childhood Cancer Awareness Month. Over 13,000 kids are diagnosed with cancer each year, making it the leading cause of death for US kids under the age of 15 (source: It’s Childhood Cancer Awareness Month, And These Kids’ Stories Will Touch You In A Way No Statistic Can). Yet, only a small portion of the US cancer budget is spent on childhood cancer and there has not been a significant breakthrough in the deadliest childhood cancers in 30 years. Therapies being used are often adult hand-me-down agents that are overly toxic for children. These agents are also not aimed at treating the unique pathology of children’s cancers (source: solvingkidscancer.org).

iPhone 022We were very lucky – yes, lucky – that Hannah’s tumor was visible, caught early and could be treated just surgically. Her form of tumor typically does not respond well to chemotherapy, and although radiation was an option – with the tumor being located on a joint, radiation could have caused permanent stiffness in her knee. Surgery – although a difficult recovery and with permanent scarring, was the best option we had, and thankfully her tumor has not spread or re-occurred (so far). So many thousands of kids are not as fortunate, and go through years of debilitating treatments and way too many lose their battles in the end.

I read this somewhere and it stuck with me, maybe because Hannah is ten years old:

Curing cancer in a 60-year-old will add an extra 20-30 years to that person’s life. Curing cancer in a 10 year old will give that person an extra 70-80 years of life.

#GoGold for September!

I was not asked nor have received any form of compensation to post about National Childhood Cancer Awareness month. I simply wish to help spread the word so that we can turn September as gold as October is pink. Please consider helping to spread the word in any way that you can.