Tuesday, May 14, 2013

Camp Out at Club CHOP

We were stuck at CHOP, waiting for G’s cellulitis to clear AND her counts to come up.

Watched counts are like the proverbial watched pot. Day after day we would wait for those labs…and then they would come tell us we were stuck for another day. It was so demoralizing.

this is the first time I ever really took many pictures at the hospital. 

Genna FELT fine. I mean, she felt kind of chemo ugh, and tired, but she loved the Zoom website & the high speed internet at CHOP. She couldn’t go to the atrium or do any exploring because she was wildly immune-compromised, but she was allowed in the oncology playroom. Because the length of our stay was so uncertain, we really didn’t have many visitors and G was mostly a VERY bored 7 year old in a VERY boring hospital room—even worse after we got exiled to a surgical floor with about a half dozen other onco kids…there were so many kids inpatient, they needed all the onco rooms for kids who needed to receive chemo. The nurse on 4 told me she nearly had a heart attack reading G’s chart.

G wanted a picture of the docs on rounds.
At least Dr. B was on service the first few days.
cards from home/school/friends. Can you believe how small she was? sigh.

We were in a foreign land in our own hospital. I had to spell out neurofibromatosis again (the only time I ever had to spell it at CHOP).

G flushing her own iv. She was the master at this. 
 She also developed an addiction for those hot pack things. She still loves them.

I was also trying to learn the whole counts thing. Apparently after so much other chemo, G’s bone marrow just freaked out at the TPCV. She needed several more transfusions over the 10 days we were stuck at CHOP. She also had to have multiple ivs, due to the cellulitis her port was off limits.

The ANC is impervious to motivational posters.

We made motivational posters for her ANC (absolute neutrophil count: the magic number that had to be moving up for us to bust out), we sang the Low Low ANC Blues, we colored and watched way too much tv and generally went stir crazy. G was miserable.

Time. Crawled.

After a week, Dave brought the kids to visit. Then we had 3 bored children in a hospital room.
G still does crazy eyes in pictures.

While we were there our friend Timmy had a bad scan. It just seemed like everything was collapsing for everyone we cared about. And our own scan day was only a few weeks away. Due to the new tumor on G’s MRI in November, we were going to have another MRI scan at the end of January. Stir crazy + scanxiety = online shopping for G’s first communion dress, which was way too expensive but perfect (a friend found it for me, and I looked it up on the playroom computer).

After a week at CHOP, Genna’s hair started falling out. In piles.

This was the straw…

Because with no hair, everyone would know. And we couldn’t deny any more that she was sick, and …I don’t know, but after 18 months, to have her hair start falling out just flattened me. No one could tell me why it was happening, G was so scared kids would laugh at her. I was so done watching her suffer.


Ultimately she only lost about half her hair. But in those days of hospital malaise, it was so hard to bear. I never left her room, except for 7 minutes in the morning when I ran to get coffee. We felt so trapped.

But finally they let us out. We got clearance very, very late, and after a last minute transfusion we busted out at 1 a.m.

There is no traffic on I95 Northbound at 1 a.m., just for reference.

G was so happy to be at home, even though school was so hard (the nurse had me on speed dial, I think), she was happy to show off her new glasses (which we picked up as soon as we could), and I tried to scrape myself together for the now one week away scan day.

G was so upset about her hair. We could mostly cover the thin spots, but G was upset by it all.  My sister mobilized a “hat hunt”, and people all over the country started sending G hats. It was amazing. The post office had to leave an extra bin for the overflow hat packages.

And then it was scan day (MRI day. I use the words interchangeably).

That scan day, Monday, January 30, 2006, was the second time I had the worst day of my life.

And for the first time, I really couldn’t say much on Caringbridge. For the entire month that followed, I never really said what was going on. Our lives were shattered, and I just had no words.

Monday, January 30, 2006 8:33 PM CST

Hi, all.

No miracle today.

The scan was not what we hoped (to say the least)…the neuro-onc /neurosurgery doctors are going to meet and determine our next best course of action.

Please pray for us.



What the doctors thought…what the scan LOOKED like, those horrible pictures…it was our worst nightmare.

The month of darkness had begun.

G and her new glasses. And smushing Rosie's face.

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