Onward and Upward



Flashes of Hope, June 2006

May 17.


Today happens to be World NF Day. Now you know, do with that what you will.

So we had our miracle reprieve; G’s progression was a weird, non-tumor, NF thing. We got to restart chemotherapy, go on G’s Make a Wish trip, and try to gut through the rest of school.

And we were so happy and grateful…and weary and run down and still vaguely terrified. By this point we couldn’t even see straight, so many odd/scary/medically challenging things had happened. We were ecstactic road kill most of the time.

This is par for the course with brain tumors AND NF. You just never know what’s going to hit next.

And a few weeks after G’s Make a Wish, our CHOP friend Timmy passed away. We were heartbroken. I still think of Timmy every time we have a brilliantly blue sky day…he had such beautiful blue eyes.

Brain tumors are horrible, dastardly beasts.

But we did have some joys to get ready for: a concert with Genna’s favorite singer, Chris Rice (she has 3 favorites now: Chris Rice, Matthew West, and Scotty McCreery, when she met Scotty this past Sunday she told me that NOW her life is complete, she has met all 3), and G’s first communion.

You don't get the sense of it here, because he was all hunched over, but Chris Rice is REALLY tall.
G was thrilled. He seemed super nervous.
Dang, I liked that purse.

In the very early days of our time at CHOP, there was a bulletin board in triage, covered with onco kid pictures…a board that fell victim to HIPPA stuff eventually, which is sad. Every week I would look at this one first communion picture of a little girl, bald head, hands folded…it was so beautiful, and to reach that moment with G kind of meant something huge to me.

After MAW we did G’s next round of chemo, and realized rather suddenly that the weird sunburn from Make a Wish was NOT sunburn at all…it reappeared with a vengeance after this round…burns that turned into blisters running up G’s hands and arms, on her feet and legs, and all over her little ears. It was horrible. At least I didn’t have any more guilt about inadequately sunblocking her…this was a full blown allergic reaction to the procarbazine, the P of the TPCV.

Our chemo cheer was never the same after that. TCV just does NOT have the same ring.



Genna and her cousins Aiden & Kevin (Aiden also made his first communion)...
if you look closely, you can see the marks from the blisters.
G picked them all off. Sorry. During first communion practice. Ew.
But she is still so cute.

best picture of G's personality ever.

But G made her first communion, albeit with blistered arms, and I checked off another milestone that I wasn’t always sure we’d reach. The day was perfect in every way.

Onco Secret #427 : You buy an obscene number of portraits. Sigh.
Our favorite is the one where she is like "CHECK OUT MY FABULOUS DRESS!"


 

The months following our miracle scan were very difficult, which seems impossible, but with the allergic reaction came a continued whomping of Genna’s blood counts, or the time we now refer to as “Transfusionfest 2006”. Between blood counts at our pediatrician and unplanned trips to Philly for blood or platelets, we were completely wiped out. 23 or 24 times G needed transfusions during that period, every time meant a long day at CHOP, finding child care for my other kids, packing up stuff for G to do. G panicked every time we went to CHOP, her anxiety was at an all time high, she was petrified of having to sleep over. The one time we went to CHOP and found out after we got there that the blood bank WAS OUT OF THE RIGHT KIND OF PLATELETS, we couldn’t even stay in Philly (the nurse practitioner offered to call Ronald McDonald House), G was so upset at the idea of staying that I had to drive the 2+ hours home and then drive back the next day.

I have a continuing, undying gratitude for people who donate blood. I used to...and then the last time I went they couldn't get enough out (not lying). The nice tech said, "well, maybe we could use this for a child" (if I only knew then that MY child would need this some day!)...the other tech said, "or a really short person".

Ahem.

In May G spiked a fever, we went to the local ER (at this point they knew us there; Life Lesson: when the local ER docs recognize you and remember what games your kid likes to play, AND don’t try to tell you that they “know how to access a port” (which is code for “I learned it in nursing school but haven’t done it in 7 years but hey, how hard can it be?”—followed by child screaming “AT CHOP THEY KNOW HOW TO DO THESE KINDS OF THINGS!”) you know you are going to the ER too often), G’s counts on this day were nowhere, and we had to get ambulance transport to CHOP (I was NOT going to stay days and days at a hospital where I have to spell things). That 4 a.m. ride to CHOP, listening to jazz over the ambulance radio while shivering in the early morning chill (we had the windows open to try and bring G’s fever down)…so surreal.

You know, that was 7 years ago today, that ride. Hm.

We were stuck a week at CHOP that time. For an ear infection. Even regular infections can mean serious business for a kid who has no immune system.

Our doctor decreased G’s dose of the T, C, and V, but still, her counts were consistently in the toilet.

Lesson Of Blood Stuff: Hemoglobin below 8 = yikes. Platelets below 50 = not so hot (some hospitals go lower; generally when G transfused she was in the 10-20 range). Weird Onco Note: Platelets look like concentrated chicken noodle soup without the noodles. They also only have to be the same Rh factor, not the same blood TYPE, apparently, which gave me a heart attack the first time I saw G getting platelets that did not match her O negative blood type.

it became kind of a joke, EVERY time we saw the Flashes of Hope people at CHOP Genna ended up needing platelets.
Thank God I haven't seen them in a while.

We were so worn down, G kept spiking fevers, or needed blood, or the other kids got sick. I was just wrung out. By mid June I figured out that in one stretch of 11 weekdays we had spent 6 days at hospitals and 2 interrupted by local doc visits (for counts). It was so hard. Reading the old CB stuff is so hard.

I so wish people KNEW, or understood this world we inhabit...this is so very tiring and lonely, sometimes. Just trying to make lunches when you're out of bread because you've been at the hospital all week...finding somewhere for the 10 year old to go play...finding dollars for parking...packing the just in case bag...day after day, it's like Verdun...sustaining losses but never getting anywhere...trench warfare of sorts. –June 21, 2006

I did realize on the way to Philly today that you can sing, to the tune of Shenandoah, “Oh Philadelphia…I long to shun you…and to stay—back in New Jersey” etc. Dave loves when I do that. (He really enjoyed our hit from Friday, “We’re—coming down, so let’s get that platelet party started!”). July 3, 2006

G was tired, and sick, and having major OCD / food issues, courtesy of her mushed hypothalamus. She didn’t have an “off” switch for food, and she would go get WHATEVER food she craved…sticks of butter…packages of cheese…it was awful because THIS was the day to day manifestation of brain tumors at our house. It sounds dumb, but the food issues were so all –encompassing at home, they caused incredible stress for all.

Did I mention that brain tumors are horrible, dastardly beasts?

Anyway, On August 24, 2006, Genna had a scan, it was stable again (huge relief), and our doctor sat us down…

In fact (prepare to be amazed)…Dr. B thinks we should strongly consider stopping chemo now, instead of doing 2 more rounds. This kind of blew us away…still pondering that. I can’t imagine having no excuse for my unfinished laundry…

Seriously, I can’t imagine NOT treating these things…but they’ve been stable a while, and G’s bone marrow can only sustain so much injury before damage becomes permanent and we inadvertently cut off future lines of chemotherapy OR create disastrous secondary disease.

Our next appointment is really in a whole month? Yikes…

Say what, Willis?

G’s bone marrow needed a break.

It is so surreal, stopping treatment when there was still tumor kind of everywhere. Of course there is relief, but for us, the relief was almost superseded by terror. I would only be at CHOP ONE TIME A MONTH?? (for port flush?) The tumors would be left all to their own nefarious devices?? After the 2 years we had had , I could not fathom this ending well.

But Genna was so happy. She had started getting scanxiety (alas), and she was so happy things were stable and she could STOP.

The hospital was my safety net. Not being there a LOT gave ME separation anxiety, really, which sounds ludicrous, but it’s true. At the hospital, everyone spoke our language, everyone understood our reality. We felt so safe there.

But now we were on our own.