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.

Reprieve!

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 16

Well, G had to recover from brain surgery first.
She looked like Rocky Balboa at the END of the movies. She was berserk from steroids, berserk from the entire ordeal. At one point she screamed, “NOBODY EVER DOES ANYTHING NICE TO ME, EVER!” while a nurse was removing the arterial blood pressure monitor, an unpleasant task. But it was so funny how she said it. We laughed. Too much. But it WAS funny.

We had lots of visitors, it was a different world from our previous hospital stay.

After a remarkably short time (4 days!) we were cleared to go home! Of course Dave wasn’t there, but my sister and my friend were visiting…in a teeny tiny sports car. We jammed into that car… (as listed in Caringbridge)

1 big suitcase
1 overstuffed computer bag
1 backpack full of snacks
1 tote full of crafts
1 miscellaneous bag of snacks, crafts, and a small soft cooler
1 bag of stuffed animals given to G since we've been here
1 Hello Kitty bag with Genna's animals from home

into Mark's sporty car.

the five balloons might be tricky.
the four people might be trickier still...

but we're coming home!

It was like a clown car... but Never stand between a Camiolo and the way OUT of the hospital. ;)

Once home, G was still kind of a wreck. We had been together SO much, she had massive separation anxiety. Ergh.

And we waited. 

The day before our scheduled appointment, the nurse practitioner called to reschedule. Our results weren’t back yet.

Um, ok.

And yes, our doctor wondered if I was alive, I had stopped e-mailing every 15 seconds. But really, I had asked all my frantic questions. I could only wait.

Finally, on March 2, 2006, we were set to go to CHOP. It was the 4th anniversary of Dave’s grandmother’s death by brain tumor. I wasn’t sure if this was a good day (ie Grandma would be All Over God about this) or yikes (for obvious reasons). On the way to CHOP we drove by several horrible accidents (sigh) and heard Casting Crowns’ song “Praise You in This Storm”, which is pretty much about “why haven’t you answered our prayers already, God? But ok, You got this”…I tried to hold things together. But we were so afraid. So afraid.

And then we got to CHOP… I did not go into cardiac arrest, even when a social worker was waiting in the exam room for us.  Hospital lesson: Social Worker waiting in exam room for you is often a BAD thing.

Thursday, March 2, 2006 5:26 PM CST

TODAY WE GOT OUR FUTURE BACK!!

Must type quickly, supposed to be at MIL's birthday, with the best present ever.

The ominous areas in G's last scan seem to be a weird NF thing, possibly unique to Genna (unusual to hear that at a major pediatric brain tumor center). But we were given all sorts of much more dire possibilities, saw the words written on every consent form before surgery...can't even believe it. Actually might say "Yay, NF!" (although I told Dr. B we DON'T have a cheer like that!!)

And we will be restarting the TPCV, which kept the known tumors stable...can't even believe it.

THANK YOU ALL FOR ALL YOUR PRAYERS AND SUPPORT!!! We cannot thank you all enough...YOUR prayers carried us through all of this. The road ahead is still long, and rough, but we are still FIGHTING TO WIN...thank you!!

…may add more later, really have to run, but I know folks are waiting...couldn't wait to share this with all of you!!!
peace,

Kristin the AMAZED!!
off to eat pizza!!!

It WAS a weird NF thing.
Dr. Storm was right.
The pathologists were a bit flummoxed, nobody knew quite what to make of it, this weird gliosis-y thing.

again, from Caringbridge:
A NOTE: SATURDAY:

E-mailed Dr. B last night...confirmed that she has NEVER seen this before, the 3 neuropathologists have never seen this before...so that would make this turn of events a ....

miracle? Not sure what to do with that...other than thankyouthankyouthankyouthankyou....

3 Neuropathologists, 1 Neuro-Oncologist, (and a partridge in a pear tree?)---mystified (and happily so, I might add).

onward & upward, and thank you all for praying...

BT lesson: SOMETIMES, VERY RARELY, it is ok to stump the neuro-oncologist. Very Rarely.

But we had time back. And with time could come research and with research we can get a cure.

TIME IS THE MOST PRECIOUS THING NF OR BT OR ANY PARENTS HAVE. Make a note of that.

So back to chemo, back to the routine, back to living in the shadow of NF. But this time, the NF thing was a win. Getting to do chemo was a miracle. Not the miracle we had originally prayed for, but we were so grateful. For years after the radiologists still referenced this area by the scary terms the biopsy proved wrong…but THEY WERE WRONG.

from Caringbridge: So the battle is still long; but now we know G can fight another day, which is colossally huge. I can’t overstate miraculous this is—multiple doctors in varying disciplines prepared us for, well, really not good stuff…strange, so strange how the definition of a miracle changes. Strange how “weird NF thing” is better than alternatives. As my dear friend Susan Amato said, who knows what else God can do? (or something like that, I know I’m squashing that up).

We had our future back. We had our G back.

And less than a month after G’s surgery, 3 weeks after Miracle Thursday, we went on G’s Make a Wish trip, another miracle of love and generosity.

It's pretty surreal...can't believe the day is finally here, can't believe we're doing Make A Wish. Talk about the things you never dreamed you'd do...I had the opportunity recently to express to someone that the price for Make A Wish is so very high. We'd trade the trip to Disney in a heartbeat for health for Genna. Half a heartbeat….

Genna said today that it made her happy & sad that we are going. She had trouble expressing what she was trying to say...finally got it out that it made her so happy people were doing this for us, it made her want to cry.

Cruella met us at the gate to Magic Kingdom..."HElllloooo, Dahling!" she said to Genna as she swept through a crowd, straight to G. G was very concerned because Chip took her little camera.
EVERY character treated G like visiting royalty. It was astounding.

We rode that Amtrak from Newark to Kissimmee, a wondrous adventure (I LOVED it, sleeping on a train is awesome, I felt like I was in a history book), we stayed at Give Kids the World (a place completely built by, run on, and infused with love), we hugged princesses and unnaturally large chipmunks (G was ALL about the characters, she only wanted to hug characters, do crafts, and ride the occasional carousel) . We had the most amazing miracle time ever.



Sea World. I love that Andrew is holding Rosie's hand.

 No characters stepped on Rosie’s little toes (she was very concerned about this), Genna felt like a princess, even Andrew had an amazing time. Aside from a weird sunburn on G’s hands and feet, everyone stayed healthy the whole time, also a miracle, since Genna was back on TPCV again…

Genna singing YMCA--her favorite-- with one of the volunteers at Give Kids the World.
You can just see where the incision was ...to this day, when she swims, you can see the scar.

Things were still tough. I didn’t know whether to laugh or cry or twitch or hide under my bed or climb a mountain. But we had another morning to wake up; our work wasn’t finished yet.

One Year and a Frightful Day to Scan

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 12

We hit the one year mark.

Part of me couldn’t believe it had been a year. I struggled to wrap my brain around how our life had changed, how so many people had been SO kind to us…we had never been on the receiving end of that kind of support, we were completely overwhelmed by the support and kindness of so many people. I wrote a long (surprise!) post reflecting on how many people had helped us, how I had suddenly learned to be assertive to protect my G…and how I would NEVER forget the Just In Case bag again.

The love and kindness we experienced are two of the beautiful things amidst the wasteland of our bt/nf journey, and continue to be so to this day. And I still bring a bag every time we go to CHOP.

G and her goddess doc (and me), September 2005.
 Her doc and I matched that day, which was kind of funny. We still do, rather often. Strange.

Anyway, summer wound down, and over Labor Day we decided to bring G to a priest who had a healing ministry.

I had refused EVERY such thing like this before this date. I knew G believed with all her heart that God would make her better. I figured if He wanted to we didn’t need to visit a limb of a medieval saint or something. It made me angry, it just seemed presumptuous or something; I love a lot of devotional stuff, but this made me mad.

But this priest from New Zealand was coming to our area, and I agreed that we could go see him. Following so close on the heels of our one year smite-aversary, this was a tough call, but G was totally into it (she LOVED praying stuff), so we went.

I still had trouble with God. But Fr. Rea was pretty awesome, so completely humble and normal. He simply prayed with us. A simple, simple, quiet set of words that only we could hear, asking God for healing for G. And while G did not get healed there (understatement of century), MY heart got healed that night. I know that may sound crazy to people, but I stand by it. After that night, for the first time in a year, I knew it wasn’t my fault that G was sick. Or maybe, more accurately, I finally believed that G’s illness was not God’s punishment on me for failing and failing. I knew it wasn’t my fault. The freedom in that moment, a moment which grew in the weeks following Fr. Rea’s visit…it’s hard to describe unless you have felt crushed by cosmic smite.

And G started second grade, replete with new challenges (sigh. I have some blazingly ranting posts about the trials of second grade social life, challenges with teachers, and the perils of the bus --brain tumor and nf school issues can be pretty epic, regardless of tumor type, from what I’ve observed, G isn’t alone in this), and we cruised on. She had been stable since that bad scan in November of 2004, if she was still stable at our Halloween scan, we would stop chemo.

We were all just so tired at this point. Some rounds G did better than others, sometimes she decided She Was Done With Chemo (problematic when you um, aren’t done), we were just tired.

G was growing alarmingly fast, some of that seemed to be tumor related, but her counts were good and she loved telling everyone about her upcoming Make A Wish trip…which we finally got on the calendar for March of 2006. We figured by then G would be feeling better, if in fact we ended chemo in October.

the last temozolomide chart

Sunday, October 16, 2005 9:21 PM CDT

Hi, all.

Round 12 is done.

I never thought I’d say that. We made it through 12 rounds of temozolomide.

Genna was a superstar this round. She gulped the pills so fast some nights I had to do the “God bless Justis, Dakota, James, Ryan, Kyle, Jed, Jordan…” for her (girls were on the other one—so Hadley and Hailey and Caden got prayers, too!). It’s our cutest chart yet (a pumpkin patch with trick-or-treaters), and Genna had no real side effects except CRABBINESS and tiredness— …

So this round is done. Who knows what the future will bring?

Yesterday I got to Andrew’s baseball game, and I could see Dave’s face…the “Oh, no, I’m trying to explain the Story of Genna” face. Apparently Genna was telling all the moms at practice about her Make a Wish trip…and someone asked Dave. Genna had said "Make a Wish came to my house, but I don't know what for." Funny, right? For as talkative as I am online, I don’t chat about this stuff to random everybody. Dave was very relieved when I showed up…and the moms were so sweet about everything. They are really lovely people. The one poor mom (the coach’s wife) was shaking after I gave her details…Genna plays with her little girls each game, our boys were on the same team when I was pregnant with Rosie...I felt bad. I’m used to saying the clinical stuff…but I’m getting weepy now, I don’t know why…

I think my pre-MRI psychosis is beginning…



As a note for brain tumor awareness, all but one of the children in G’s chemo list of prayers have passed away. All. But. One.

There are no words for that.

I felt bad about this post a day later (long school vent included in it), so the next day I related this story…which kind of captures G’s way of the world:

Genna had "writing center" at school (an activity center in the classroom) so she made cards for all of us...well, wrote notes on donated cards. So I got a "thinking of you" card, Andrew & Rosie got festive pictures/blank inside cards...and she wrote Dave a sympathy card. "Earth has no sorrow heaven can not heal" on the outside, "thinking of you at this difficult time" on the inside...and a note from G about how she's sorry work is so hard for Daddy right now. We pretty much fell apart laughing. You know Daddy's job schedule is bad when the 7 year old happily chooses a sympathy card...

And then, on Halloween, we scanned. The day before the scan we brought the kids to the Phillies/CHOP Halloween party, they had a great time meeting the Philly Phanatic and playing silly games, then we sent Andrew home and did scan day on Monday.

Life Lesson: Don’t Scan on Halloween. You have to know that's not going to end well.

Monday, October 31, 2005 8:20 PM CST

Hi, all.

No miracle for us today.

For the record, the tumors are stable. Genna knows the tumors are stable. She is satisfied with this. And growth hormone levels are ok…on the high side of normal, but still normal. She’s not off the charts or anything, so apparently I’m supposed to stop worrying. Genna knows her tumors are stable. This is what she and Andrew know, please remember this if you continue reading.

But…

Don’t you love the “but”? It’s like the scary music in a movie, just before the clueless coed walks through the door of doom. This is sort of the abandon all hope ye who read this warning…well, not all hope, that’s me being melodramatic, but let’s just say when your neuro-oncologist says after talking to the head radiologist that there are some areas of concern, this isn’t reason to sing happy songs.

Simply, some “flecks” show up on the scan that have not appeared before. Is this because the post-shunt-revision ventricles are so much smaller now we can see these previously obscured enhanced areas? Perhaps. Is it a weird NF enhancement thing? Maybe. Is it an area of new (inoperable) growth within the brainstem? Well…

It gave Dr. B pause. Enough said.

So the tumor board will confer about what this may/could mean on Wednesday, and Dr. B will call me. …

Not doing so hot right now, so please forgive me if I hide a bit. I feel a little bit sucker punched…but I knew I wasn’t worried enough this time. I SWEAR, results almost directly conversely correlate to my level of worry.

I did mention to Dr. B that "benign brain tumor" is a complete misnomer. There is NOTHING benign about this except the rate of growth. Which is a big deal, but benign doesn't mean no problemo. Benign doesn't mean we can ignore it. Benign stinks too. Dr. B agreed, kind of sadly.

When Dr. B called, we learned that yes, those spots were new tumor in Genna’s brainstem. And just like that, we were back at square one again.

Stability, Wishes, and a Fail

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 11

With our first stable scan ever, we settled into something of a routine. Once a month for 5 days Genna would take her pills…the chemo got harder as we went along ( chemo has a cumulative effect, over time it hits the system harder. Not necessarily the TUMOR, but the rest of the body starts to feel the effects more profoundly as time progresses). G struggled with the pills, we had elaborate cheers (after a few months Rosie became the cheering squad, her chubby not quite 3 year old self waving her arms and saying “Go, Genna!” until all 5 pills were swallowed each night), we used bribery (a Happy Meal at the end of each round), we created (ok, I created) elaborate sticker charts.

G got through the rest of first grade, we survived it, her eyes seemed to be improving, things were generally ok.

In May we had a SECOND stable scan, and at some point after that Dr. B asked if I had contacted Make a Wish yet.

Um, no.

She looked at me, and I sort of plaintively said, “no, that’s for sick kids”.

To her credit, our doctor did NOT facepalm on the spot. But she told me to call.

This is exhibit 1A in “Denial is NOT just a River In Egypt—Oncostyle”. Meh.

See, NF brain tumors AREN’T cancer, usually (although they can be). And G’s tumors were low grade, and low grade means not as bad, right? So she was on chemo #2, so she had vision loss, so we had created a network of school support, so she had no energy, she wasn’t as sick as a Make a Wish kid.

Sigh.

I broached the idea of a wish to G, she told me she would like a Care Bear. Since at that point we had 57 Care Bears in the house, I told her to think bigger. I got her a dvd to show her what Disney World was (Dr. B suggested we show her something that would be good for all 3 kids, since G was thinking stuffed animal and our other kids were having such a hard time, too). After a week or so of watching that, etc., Genna came to Announce Her Wish to me.

“I want to go to Disney World!” she said.                                         

strategic sticker chart design

Woo!

“On a train!”

What? I explained I didn’t know if Make a Wish would DO that, taking a train to Florida from NJ was expensive and long and yikes. Apparently Genna was petrified of flying, which I didn’t know (and I swear she had NEVER heard me be phobic, since I am a Big Fan of Terra Firma).

“Well,” she said, very seriously, after thinking a moment, “then I guess we could go to Philly instead.”

I told her I would ask the MAW people about the train. Ahem.

G’s 7th birthday was a joy, birthdays are very meaningful when you spend a lot of time in an oncology ward, and we have a chemo chart celebrating the occasion.

 Just a few weeks after G’s birthday, almost exactly a year after the fateful eye check, we had another scan, and things were stable AGAIN! The ventricles were a little enlarged, but after some checking folks decided G was ok.

Woo!

In the days following the scan, G complained a few times of having a headache. To clarify, this meant she mentioned “hey, I think my head hurts!” on 3 occasions, and then 10 minutes later would say, “hey! My head doesn’t hurt anymore!” It was not super dramatic.

Except that G NEVER had headaches. Ever. Not before diagnosis, not with tumor growth, never.

So, being a dutiful and scrupulous mother, and being really petrified of missing something catastrophic again, I mentioned the headaches to Dr. B at our visit the week after the scan.

Sigh.

After a few phone calls, some poking and prodding, and a singularly unpleasant test that involved putting a giant (I mean GIANT) needle in G’s head (during which she screamed and cried for Daddy, who was at work), we were met with a solemn row of Dr. B, neurosurgery resident, and nurse Mindy filing into our room where we waited.

Solemn row of multiple medical people is NEVER GOOD.

G had shunt failure.

We both kind of lost it, we weren’t allowed to go home, G had to have surgery the next morning (it was late in the day at this point, and while shunt failure can be life threatening, G’s was caught early. Yay me, sigh) …but just having to stay unexpectedly was so demoralizing, and for the first (and last) time I didn’t have a Just In Case bag with me…and the hospital was FREEZING, it was August and the ac was cranked up so the clinic was about 40 degrees.

G was crying, I was crying (breaking my "do not cry at CHOP rule"), Mindy made G a card, the child life specialist gave G a stuffed dog (stuffed animal #4279), we just huddled miserably in a corner until a space in the PICU would be ready.

Those unexpected having to stays are brutal on everyone in the family. THOSE are the times G remembers from these early days.

Several hours later Dave arrived with supplies, G had surgery the next day (it wasn’t nearly as bad as the first shunt surgery), and we got home just in time for our first magical MAW meeting.

I felt a little bad, G was a WRECK at the meeting with the wish granters (can I blame her, one day after shunt surgery?) and Rosie was in rare cuteness form, the ladies were smitten with my baby…but they told G that she was going to go to Disney on a train.

Never, ever underestimate the power of something to look forward to. We would need that and more in the months to come…