Saturday, May 18, 2013

Life After Chemo

I am sorry today is so late.
Yesterday, we lost our CHOP friend Caitlin.
This 9 year old girl brought joy to all who knew her. For Caitlin and our other friends, we will NEVER stop working to find a cure. Please keep Meri, Jim, and little brother Jacob in your prayers.
Fly Free, Sweet Caitlin...

For the month of May, in honor of brain tumor and NF awareness month (so convenient to have them at the same time!), I am trying to tell our family's story of living through both. I hope that by the end folks have a sense what brain tumors and NF can do to a family, why and how we can work for better treatments (and maybe a cure!), and why we should always, always hope.

May 18

Life without chemo. Bizarroworld. I had so. Much. Time.

Granted, I had done NOTHING in my house for 2 solid years, so…yeah. I had a lot to fill my time.

And honestly, fear still filled a lot of every day.

G was now in 3rd grade, Andrew in 6th, Rosie was ready to start pre-K. After the hellish summer, I needed some oomph for fall.

first day of school, 2006

It’s sort of like Jaws…you know the shark is still in the water, even when you can’t see it, and yet people are Swimming For Heaven’s Sake, and that sort of dread of large submerged teeth never goes away…like the “da- dum….da-dum…da-dum da-dum da-dum” is playing and playing all the time. I’m so glad for the break, I just don’t remember how to do this kind of living. And I know how fragile a break it is…Genna keeps telling everyone she is getting 2 months off from chemo, I haven’t told her that the break could be longer…she’s had enough disappointment in life, that would be colossal, to think the break was longer and then have to re-start chemo…yikes and a half.

She has said, a few times over the last few weeks, sort of resignedly, “my tumor will never go away.” I point out that really things are pretty good, she’s in school, going to dance, she has friends and fun outside—she agrees with all of that. Still, I know I have to work harder to keep her strong, which is tricky when I’m sort of like a mushy banana most of the time.
Yeah, I did those pigtails. Be impressed.

School was a terrible challenge for Genna. One of her teachers decided that her anxiety was a character issue, and started addressing it as such. We had meetings, we argued about things, I was at the end of my rope…and G just tried so hard, she would cry about the way she was treated, and then try to be loving. Homework took hours…getting her services covered was another new battle…

And my firstborn just was a disaster in school, at least his teacher was so supportive, but concerned, and poor Rosie finally stopped sleeping in our bed every night…

Oncology stuff just takes. So. Much. Time. So much time. It’s the big secret of oncology, it just takes so bloody much time. And then off treatment, dealing with the wreckage of treatment and life with oncological yikes takes so much time.

And time is everything in BT and NF world, remember, you were supposed to make a note of that.

But there were hopeful things, too. Genna’s hair was filling all back in, she had piles of one inch long hair everywhere (one mom at baseball complimented her on her bangs…which were just new hair!). We registered for the first ever Race for Hope Philadelphia, a brain tumor race…and we called ourselves the G-force! …(that is where the G-foRce! was born) , we had signs and a big team and celebrated hope, even as I dragged G in a wagon the 3.1 miles along the road by the Philly Art Museum.

Clinic visits were a joy, just seeing everyone, G told jokes and giggled and showed off whatever new thing she had with her, and all the nurses and registration people and child life folks made her feel like a star. I felt so reassured every time we went…even though we were talking about all the challenges G was facing, all the difficulties in school, the behavior/anxiety challenges, the food issues, everything…I still felt better just being back at CHOP.

and we brought chocolate brains to clinic.
That was just how we rolled.

Note her "bangs", ie new hair.

During this time we also brought ROSIE to get her eyes checked by the neuro-ophthalmologist at CHOP, as well as Dr. B. Based on the train wreck that G’s eyes had been, we figured getting our second NF kid checked at CHOP was a good idea. Onco Lesson: If you show up in clinic with another child for a scheduled appointment, you Really Freak People Out. But Rosie seemed fine.

We ran our first Coffeehouse for a Cure for NF (adapted from our concert of the year before), our NF friend Sandra was really, really ill, but she was determined to perform at our Coffeehouse, and G loved so much to be with her. But we knew that things were really bad. Sandra had sarcomas, and there were really no good treatment options left.

NF is also a horrible, dastardly beast.

As the months passed G’s eyes improved to the point that a)she no longer qualified for any help from the Commission for the Blind (a bittersweet day, she really still NEEDED some help, but one eye was correctable to 20/30. She had no peripheral vision, and needed sharp contrast, but one decent eye means no help—I’m ok with that, really!—when watching the Preakness that year she asked the animals running were horses or cows…yeah, she still needed help) and b) we gave back the Brailler. G was cheating too much, trying to READ the bumps…

Thus marking the ONLY TIME IN THE HISTORY OF THE WORLD that I was happy to hear my child was cheating at something. 

And G had a scan that was stable, (although BRAIN TUMOR NOTE: if a neurosurgeon, YOUR neurosurgeon walks past the MRI waiting area towards the scanners while your child is IN the scanner, you WILL have a full bore linear panic attack, even if he’s not there for you. Lesson learned, Nov. 2006) …I was utterly neuro-oncologically needy, I think I e-mailed our doc 8 times, and learned this:

I am learning that neuro-oncology is a field of “ack! The bridge is burning!” …and that if no bridge is burning, things are considered ok. I just have trouble sometimes seeing around the smoldery spots, or the charred places, or the matchboxes strewn all over the span. (Nov 2006)

3 months later G had another stable scan (that time she told the nurse her name was Sarah when asked. Nice try, GENNA still had to get scanned), and then another in May, and finally, after 3 stable scans, we decided that Genna could get de-ported. She could lose that blasted port. She was thrilled, now fevers would NOT necessitate an instant hospital trip. Woo!

I was happy, too, finally, I actually felt a little peaceful…especially since on our most recent local ER trip I found my assertiveness and told a doctor we were NOT going to be admitted, that was NOT HOW THIS WORKED. Ahem.

For that day, de-portation day, we had a party.

I had been too afraid to celebrate the end of chemo, but in May in 2007 we were finally able to celebrate stability. I got a Costco membership so I could get a magnificent cake. Of course I didn’t order one (I just got the membership and walked to the cake case), so it was a God Bless America cake, which amused me since we were calling this a De-portation Party.

We were living. Stability was a nice place to be, even if the shadow of NF and those lurking brain tumors was always, always with us.

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