Chemo #1

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 8

I remember nothing about the week between shunt surgery and returning for the port/chemo day except that I did not eat. I think people brought us meals, a friend brought me a 3 lb bag of M&Ms which I couldn’t open. I did make a prettier cover for the info binder they gave us (see my post about binder trauma from last year at this time). My other kids had no clue what was going on, my Rosie started sleeping with us every night, Andrew was a wreck, too.

I found this one picture from that week.
Behind G is the massive Care Bear someone gave her.
In that first 2 week period I think she got about 2 dozen stuffed animals.
this is also our old kitchen. ergh.  

At some point this week (or thereabouts), I realized that Rosie had café au lait spots too.

Yes.

if a mom's brain implodes inside her skull, will anyone hear it? 

No words. I had zero to even fathom that my baby had this horrible NF thing too…

And Genna was in complete horrifying meltdown.

Apparently when you have significant hydrocephalus and it gets relieved, the change in intercranial pressure can affect behavior significantly. Hypothalamic tumor can also affect behavior, and between the two, Genna was in terrifying OCD type meltdowns several times those first few days.

Aside from that, we had school to get ready for. I had humanity to hide from. Shock covered everything we did, we just sort of fumbled through whatever the doctors told us to do.

And my first NF friend, momma Beth, sent me a long email about chemo and surviving. I still have that letter, printed out, in a binder. My family is STILL grateful that Beth suggested we get more tv channels (we had only basic antenna channels, no cable then), so G could watch kid shows when she didn’t feel good.

Every time we got bad news after that, we got more channels. We now have approximately 749 television channels, indirectly thanks to NF and brain tumors. Sigh. You don’t see THAT in any of the literature, do you?

Here is how I described it on Caringbridge:

Thursday, September 9, 2004 1:53 PM CDT

Hello, again.

A quick update on things here. Genna got her haircut today. (we knew G might lose her hair, this was a pre-emptive strike) While I was pretty emotional about it, it actually looks really cute. Kathy G is a goddess, and even brought treats. I should have brought Genna to her ages ago.

We're trying to determine whether or not Genna can safely start school: she received her chicken pox vaccine years ago, but apparently there were some hold outs in her class. Chicken pox is very dangerous for kids on chemo. I have a call in to the oncologist to make sure G's vaccine will hold up once she starts chemo, or if recently vaccinated kids are a risk. I really hope she can start school; she's so excited.

Which brings up the one other thing I figured I should mention, especially for those folks who see us around. Genna is completely asymptomatic at this point. She seems fine, which is disconcerting, I know. She just went outside to play. While this is great (i.e. thank God the tumor, while quite large, hasn't hurt her much yet), it's made it that much harder to wrap our minds around the reality of diagnosis. So if you see Genna, or call here, don't be surprised if she's as feisty as always.

And thankfully her behavior has levelled out a bit; post-surgery was rough here, which is apparently a common result of a sudden decrease in intercranial pressure. A little less "ferocious diva", a little more our sweet Gennahenna.

We hope to have some family time this weekend (since last weekend's planned getaway didn't happen), and then off to Philly on Sunday evening. We should be home by dinner on Monday if all goes well.

thanks for your continued prayers,

Kristin

Anyway, G started first grade, so happy (although we had to tell her she could NOT keep showing kids her abdominal scar from the shunt. Eek) , and then on September 13, 2004, my dad’s birthday, we showed up at CHOP, ready for a port and chemo.

We were petrified.

G got through surgery fine, a port is not a major procedure. Essentially a little metal and rubber plug (almost like a wine-bottle re-topper you can get) with a tube attached to it was placed in G’s chest. The tube went right into a vein. This way nurses could plug a needle into G’s chest without having to search for a vein; we could numb the skin over the rubber plug and G would have no pain.

this is fancier than the one G had then. Hers was round and blue, not triangly and purple. I wonder if the one she has now is purple, she would like that.

G got rolled back to the day hospital (we learned that is the name of the place kids get chemo), a nurse came in with a tiny vial of clear liquid, and I was kind of agog, I guess I expected chemo to be glowing neon scary smoking green or something. I made a comment about poisoning my child (oh how it hurt my heart to see that medicine put in my G), the nurse got a little irked at me.

The second medicine, the carboplatin, took longer, but G slept through the entire thing.

Sigh. One chemo down, only about 60 more times to go.

Carboplatin /Vincristine is often the first therapy children get for low grade brain tumors. It is given once a week, after 10 weeks you scan to see if it’s working (has the tumor stabilized, or, in my mind, shrunk even a little), and then you do it for a year.

I kept thinking, G will be well into second grade when we are done with this. That is so long, a year.

To our surprise, G did pretty well with chemo. Of course the day AFTER surgery/first dose she spiked a fever, which meant we had to go to our local ER and spell things and NOT let them touch the new port and get admitted and find out G was fine.

The rest of the week G had some stomach aches, but as day passed into day she kept almost all of her mountains of hair, she was tired but still got to school for at least part of each day, yes, she would wake up in the night and come tell me that she just didn’t feel good, AND she woke up every day at 4 a.m. FOR THE DAY, but we were surviving. We were getting into a routine. Each week Dave & I would take G to the hospital. We started to know the nurses, G had a few favorites who would help her through the ugh of port access (just because the needle in the chest doesn’t hurt doesn’t mean a kid is ok with the process. It’s way not cool).

I couldn’t even speak to God. Jesus I was ok with, but God…I had no words for Him. Well, no printable ones. And Teresia Benedicta of the Cross? I was so mad at her. I was just so angry, and so afraid, and so exhausted. And angry.

About a month into things, G’s behavior was getting scary. More and more she was falling into odd OCD rituals, erasing mistakes on her homework 15 and 20 times, until she made holes in the paper. Re-walking pieces of sidewalk until she got it “right”. She had an elaborate 20+ step bedtime routine that had to be followed exactly, or she would become hysterical.


some of the ritual. Everything had to be done in this order, or we had to start over.
The chart is an attempt to limit the growth of the ritual,
a tactic that DID work, eventually.  Well, with medication help,  too.


After Rutgers Homecoming, an attempt at normalcy, G pulled away from me in a crowd of thousands to “re-walk” a piece of sidewalk. I knew we needed help.


 

that day at RU. My poor baby.



trying to have a normal day for Andrew, too.

We had a long conversation with Dr. B about medicine, and we had G start talking to a psychologist. Brain tumors can often cause emotional and behavioral difficulties because the dang tumor squishes the parts of the brain that regulate impulse control and behavior. We had a very painful meeting at G’s school where a teacher asked if G wouldn’t STOP erasing or re-doing work, wasn’t that a character issue? Wasn’t she being disobedient?

I told them if they had a problem with her behavior, to take it up with God who gave her the brain tumor, and then I started to weep and everyone pretended not to notice.

Awkward.

We did decide that Genna needed to start only going to school half days. She was just so tired, so tired all the time, she was napping every day in the nurse’s office after lunch.

On the OCD front, after some tweaking of meds, and work with Merritt (oh , how we miss Dr. J!), G did start to improve. Those meds gave me my child back, and I am grateful.

We were chugging (ok, maybe limping) through induction. Scan day was set for November 29/

In early November I got a call from the school nurse.

Genna had failed a vision test at school, like EPICALLY failed it.  The nurse was concerned.

I felt that feeling again, that sinking, collapsing feeling, like my insides were draining out through my toes.

“G, “ I asked, she was sitting on my bed by where we had our computer, “can you see me?”

“A little!” she said cheerfully. I was maybe 8 feet away.

I started asking her if she could see things in the room, random things.

And she couldn’t. Most of them she could not see.

Somehow she had compensated so well, none of us realized she was going blind.

No inspirational music filled my head. Just despair.