Living and the Sunshine (ala Camp)

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 25

Today my Rosebud is 11.

In the midst of stable, challenges continued. School was a CONSTANT source of stress for G. My son was generally imploding… the sibling wreckage of brain tumor/nf diagnosis is a gift that keeps on giving. And after 4 years you age out of Super Sibs, the awesome sibling support organization for onco sibs. They aren’t made for 6 and 7 and 8 years of battling…. Rosie was mostly fine, but she had some plaguing stomach pain issues (which necessitated a bunch of doc appointments) and her ear bothered her at odd moments and I had to have several annoying conversations with her orthodontist about the realities of orthodontia and brain scans (BT note: MRI picks up metal in mouth as artifact on a scan, it blurs the images, so kids with braces have to generally get them OFF before scans. Took me a few conversations to get the orthodontist to understand that only one of us was the expert on brain tumors in my kid. Not pretty). My workload increased, which was a good thing but also a challenge.

Scans following the Scare of Summer 2010 continued to be complicated but stable. Scan reports used words like “infiltration” and “slowly grown”. We knew the writing was on the wall, but that is so hard to explain. Genna SEEMED so good, you know? A lot of people in our family stopped following the caringbridge page, it just got to be too much, I was told I was too depressing.

Living with the elephant in the living room was becoming untenable.

So finally, after much fear and trembling, I signed our family up for a family brain tumor camp, Camp Sunshine. I was so excited and SO nervous to finally meet some of the families I had known virtually for 6+ years. We needed to find some place where our daily yikes made sense.

And we got accepted! Over President’s Day weekend, we hit Camp Sunshine for the first time…

(I need to) try to express in words what Camp Sunshine was like.

Let’s put it this way:1. Some of my children would rather go back there than go to LAKE GEORGE. Seriously.

2. One of my children said, “I wish people in NJ were like my friends at Camp, they were just so nice”. (not one of my female children--!!!!!!!!!!!!).

3. That same child was seen smiling, laughing, and participating in goofy camp stuff. (!!!!!!)

4. We got to be in a room with 40 families who speak our same terrifying dialect of smote.

5. Better yet, we laughed and laughed with those families.

6. I got to finally meet some people who literally have carried me in some of our darkest times over the last 6.5 years.

7. Genna instantly endeared herself to all of the 2-4 year olds present.

8. Rosie skied down a mountain. Dave & I snowshoed on a lake. Egads! Adventures!

9. I got to prove the existence of Dave to people I only have ever spoken to online.; )

10. I DID NOT WORRY ABOUT SCHOOL OR COFFEEHOUSE WHILE THERE. NOT ONCE.

11. We met at least one other child with some of the identical food issues G has. I am not just a food psycho to G. This hypothalamus crap is for real, if you’ll pardon my use of the vernacular.

12. We met tons of amazing new friends.

13. Camp Sunshine felt like Give Kids the World (where we stayed on G’s Make a Wish trip)…sans palm trees and plus lots of snow. The feeling of love was the same.

The whole place was just LOVE.

eyeballs. Note the Yankees Ensembles.ahem.

Major lily pads!!! Camp gave us the oomph we needed for life, for the Coffeehouse that was around the corner, for our next race, for everything. Camp Sunshine IS the Best Medicine For a Family, EVER.

G also had a scan around the corner…and it was stable, with one area a speck SMALLER! We had never seen that word before, even if it was microscopic, there was a portion of tumor that seemed smaller. Woo!

We were living.

Rosie has taken to spelling out neurofibromatosis and plexiform neurofibroma and optic glioma (hers doesn’t involve the chiasm or hypothalamus), she carried the words on little post-its into her 3rd grade class to add to the spelling bee. She owns those words now, without the fear that I have when I hear them. She doesn’t know the fear yet, and NF is all she’s ever known.

By this time a lot of our support system had moved away or was planning to move away. This was so hard for G, and for us, too…you don’t realize how hermit-making perpetual oncology precipice can be. Meh.

In the spring I got the official confirmation, both girls would scan in July, right after G’s 13th birthday. This was in the back of my mind as I trained for the NFE relay down the shore, signed up for Camp Sunshine for the summer (we got in! woo!), tried to get my firstborn out of an academic abyss he had flung himself into, met with teachers at G’s school about ongoing issues…endless…

Our real struggle was with a medication switch for G, she had outgrown her original “peaceful” medicine, and our first attempt at a switch was an unmitigated disaster.

Genna’s medication switch has become more challenging. Without going into tons of details, let me just say I hate brain tumors with every fiber of my depressed being and I hate people who say that serious brain issues can just be fixed with happy thoughts and a turnip. I hate that brain tumors can so deeply mess with who you are. My poor G is so unhappy, just miserably anxious and unhappy. We are continuing to fiddle with the dose, and hopefully as I begin phase 3 of New Med this week we will start to see a happier Genna again.

She used to be so happy. So freaking happy.

Did I mention my thoughts about brain tumors and nf and those things that rob my child of her childhood? I did? Oh, phew.

Anyway, please pray for my Genna. I hate hate hate the way things are here right now for her. I so want her to enjoy life.

I had no idea then how much harder things were about to become.

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.